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    <title>solving-kids-cancer-143533</title>
    <link>https://www.solvingkidscancer.org</link>
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      <title>Call for Research Grant Proposals: Advancing Medulloblastoma Research</title>
      <link>https://www.solvingkidscancer.org/call-for-research-grant-proposals-advancing-medulloblastoma-research</link>
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           Call For Proposals
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           Call for Research Grant Proposals: Advancing Medulloblastoma Research
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           Funding Organizations: The CURE Collaborative (Charities United for Research Excellence)
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           Bibi Fund, Morgan Adams Foundation, Solving Kids’ Cancer, Ty Louis Foundation
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           Grant Title: CURE-MB: 2026 Medulloblastoma Breakthrough Catalyst Grants
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           Letter of Intent (LOI) Deadline: March 1, 2026
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           Full Proposal Deadline for Invited LOIs: May 1, 2026
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           Grant Amount: Up to $150,000 per award
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           Number of Awards: 2
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           Overview
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           The CURE Collaborative (Charities United for Research Excellence) invites Letters of Intent
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            for bold, high-risk, high-reward projects that can rapidly advance understanding and treatment of medulloblastoma. We encourage a wide spectrum of proposals that will improve outcomes for medulloblastoma, including those designed to generate pilot/seed data that will position investigators/teams for larger external funding.
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           Scope of Funding
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           We welcome proposals that include (but are not limited to):
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            Biology &amp;amp; mechanisms: molecular, genetic, and epigenetic drivers of medulloblastoma pathogenesis.
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            Therapeutic innovation: novel targeted agents, immunotherapies, and approaches to personalization/precision medicine.
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            Translational impact: studies that bridge laboratory discoveries to clear clinical application pathways.
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           Eligibility Criteria
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            Researchers worldwide affiliated with accredited academic institutions, hospitals, or research organizations.
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            Multidisciplinary and collaborative projects are encouraged.
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            Investigators at all stages of their career are eligible to apply.
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            Preliminary data is not a pre-requisite.
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            Clinical trials are not eligible for funding.
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            Investigators may submit more than one LOI.
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           Application Process
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           Interested applicants must submit:
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             Letter of Intent (max 1 page): objectives/aims, brief methodology, expected outcomes, and a concise innovation paragraph (Times New Roman, 11pt, 1” margins). An additional page of pertinent references is permitted.  Please include a separate cover page with proposal title and name of investigator and submit as a single PDF file with the document file labelled with the principal investigator name. LOI should be submitted to
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            grants@solvingkidscancer.org
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             by 11:59 pm ET March 1, 2026
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            Following LOI review, selected applicants will be invited to submit a full proposal by May 1, 2026.
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           Evaluation Criteria
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           Proposals will be evaluated based on the following:
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            Scientific merit and originality/innovation
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            Feasibility and methodological rigor
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            Investigator qualifications and track record
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            Relevance to medulloblastoma
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           Potential impact, including but not limited to the likelihood of leveraging larger funding opportunities
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           Funding and Reporting Requirements
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            Up to 
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            $150,000
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             total per award, 
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            disbursed over 2 years
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             (milestones in 
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            2026
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             and 
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            2027
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            ).
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            Progress and financial reports
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             are required prior to the second-year milestone and at project completion.
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            Successful projects may be considered for 
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            renewal or supplemental funding
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             based on results.
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            No indirect costs
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             or 
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            PI
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             (principal investigator)
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            salary
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             are permitted.
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           Submission and Contact Information
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            LOIs
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             must be submitted electronically to 
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            grants@solvingkidscancer.org
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             by 
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            .
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            Invited full proposals
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             are due 
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            May 1, 2026
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            .
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            For questions, contact 
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            Donna Ludwinski
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             at 
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            donna@solvingkidscancer.org
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      <pubDate>Wed, 14 Jan 2026 16:49:06 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/call-for-research-grant-proposals-advancing-medulloblastoma-research</guid>
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      <title>Care For Rare Funding Collaborative</title>
      <link>https://www.solvingkidscancer.org/care-for-rare-funding-collaborative</link>
      <description>Nonprofits Collaborate on funding research for rare pediatric brain tumors</description>
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           CARE FOR RARE Collaborative Awards $600,000 to Advance Research in Aggressive Childhood Brain Tumors
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           New York, NY,  Oct 1, 2025
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           –
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            The CARE FOR RARE Collaborative, comprised of six pediatric cancer charities, is announcing $600,000 in funding for rare childhood brain cancers. Three $200,000 grants have been awarded to support research on Embryonal Tumor with Multilayered Rosettes (ETMR) and Atypical Teratoid/Rhabdoid Tumor (ATRT). 
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           The recipients are:
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             Johannes Gojo, MD, PhD, Professor of Pediatric Neuro-Oncology, Medical University of Vienna, Austria, for
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            “Advanced Resistance Mapping and Overcoming Relapse of ETMR (ARMOR)”
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             Eric Raabe, MD, PhD, Associate Professor of Pediatric Oncology and Pathology, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University School of Medicine for
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            “Combined epigenetic targeting in ATRT”
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             Rajeev Vibhakar, MD, PhD, Professor, Department of Pediatrics, Neuro-Oncology Division, University of Colorado, Denver for
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            “Targeting CDK7 for AT/RT Therapy”
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           These grants, totaling $600,000, aim to advance discoveries to improve outcomes in these rare and aggressive pediatric brain tumors that affect very young children. 
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           About ETMR and ATRT
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           ETMR almost exclusively affects children under four years of age and currently has a dismal 5-year survival rate of just 10–30%, despite intensive therapies. Driven by unique molecular features, these tumors are often therapy-resistant or relapse quickly, and very little is known about why current treatments fail.
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           ATRT is a rare and aggressive brain tumor that primarily affects children under the age of three and carries a very poor prognosis, with a 5-year survival rate around 30% despite intensive treatment. Defined by specific genetic alterations, ATRTs often recur rapidly, and the reasons behind treatment resistance remain poorly understood.
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           About The CARE FOR RARE Collaborative
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            The CARE FOR RARE Collaborative is a bold effort to address the lack of research and funding in these tumor types with the goal to improve survival in these children and includes the following charities:
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           Bibi Fund, The Jonah Finn Foundation, Gold Ribbon Kids Cancer Foundation, Solving Kids’ Cancer, Hope4ATRT Foundation, and the Ty Louis Campbell Foundation
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           “We urgently need to understand why these tumors are so difficult to treat,” said Cindy Campbell, Co-Founder of Ty Louis Campbell Foundation. “Our collaborative is addressing this need head on, and we won’t stop until we see dramatic improvements in outcomes in these understudied, rare tumors.”
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           About the Funders
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    &lt;a href="https://www.solvingkidscancer.org/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Solving Kids’ Cancer
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            is not just our name, it’s our mission. We help accelerate new clinical trials of next-generation treatments including immunotherapy, targeted agents, and combination therapies through research advocacy, with an understanding of the childhood cancer landscape and current unmet needs to wisely invest in innovative projects. 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
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    &lt;a href="http://www.hope4atrt.org" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        &lt;br/&gt;&#xD;
        
            Hope4ATRT Foundation
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , a research entity of Out of Zion, Inc., supports families fighting ATRT by providing up-to-date resources and research. Our mission is to be a centralized site where parents can find information to navigate their child’s diagnosis, treatment, and support. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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    &lt;a href="https://goldribbon-kids.org/" target="_blank"&gt;&#xD;
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        &lt;br/&gt;&#xD;
        
            Gold Ribbon Kids Foundation
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            is dedicated to advancing research, advocacy, and support for children and families affected by pediatric cancer. Our mission is to drive innovation in treatments for rare childhood cancers while providing hope and resources to families in need. We partner with leading researchers and organizations worldwide to accelerate cures. 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://secure.solvingkidscancer.org/np/clients/solvingkidscancer/campaign.jsp?campaign=133" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        &lt;br/&gt;&#xD;
        
            The Bibi Fund for Rare Childhood Cancer Research
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            funds pediatric cancer research with a focus on the rarest and most aggressive childhood brain cancers.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.jonahfinnfoundation.org/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        &lt;br/&gt;&#xD;
        
            The Jonah Finn Foundation
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ’s mission is to catalyze groundbreaking preclinical research into ETMR and other rare pediatric brain cancers, fostering hope for a cure by supporting transformative research and encouraging global scientific collaboration.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;a href="https://www.thetlcfoundation.org/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            The Ty Louis Campbell Foundation
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            funds innovative research and clinical trials specifically geared toward the treatment of the most aggressive childhood cancers. Our mission is to help fund the intelligence and technology that will improve long-term survival rates and minimize side-effects for children diagnosed with the deadliest cancers, while helping to care for families when their child is in treatment by providing financial assistance and uplifting experiences.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           ###
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      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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           For media inquiries contact Kristi McKay
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           kristi@solvingkidscancer.org
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    &lt;/span&gt;&#xD;
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      &lt;br/&gt;&#xD;
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&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Care+for+Rare+web+image.png" length="108211" type="image/png" />
      <pubDate>Wed, 10 Sep 2025 18:18:32 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/care-for-rare-funding-collaborative</guid>
      <g-custom:tags type="string">News &amp; Views,Press Releases</g-custom:tags>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Care+for+Rare+web+image.png">
        <media:description>thumbnail</media:description>
      </media:content>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Care+for+Rare+web+image.png">
        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>Lace Up for Kids 2025</title>
      <link>https://www.solvingkidscancer.org/blog/childhood-cancer-awareness-month-2025</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Childhood Cancer Awareness Month: Lace Up for Kids 2025
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    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-4e096b87.png" alt="A poster for lace up for kids with a butterfly on it. https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Every year, over 
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    &lt;strong&gt;&#xD;
      
           400,000 children worldwide
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            receive the heart-wrenching diagnosis of cancer. This staggering number reminds us of the crucial need for continued awareness, research, and support. This September, during 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Childhood Cancer Awareness Month
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , we invite you to join Solving Kids’ Cancer’s Lace Up for Kids program and make a difference. Together, we can shine a light on the realities of childhood cancer and emphasize the importance of life-saving research.
          &#xD;
    &lt;/span&gt;&#xD;
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    &lt;br/&gt;&#xD;
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           What is Lace Up for Kids?
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    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lace Up for Kids is more than just a campaign; it’s a movement! Launched in 2017, this initiative has united communities across the globe to raise awareness and funds for pediatric cancer research. By simply swapping your regular shoelaces for our special gold laces, you can show your support and help drive change. The power of this program lies in its simplicity and the heartfelt commitment of individuals like you.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-768x192.png" alt="A yellow button that says `` register now '' on a white background."/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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           How to Participate in Lace Up for Kids
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    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Getting involved in Lace Up for Kids is fun and easy! Follow these three simple steps to make a big impact:
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
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           Step 1: Care
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           First, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
      
           register for Lace Up for Kids
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and create your personal childhood cancer fundraiser page. This is your opportunity to share your story, set your fundraising goal, and show why this cause matters to you. It’s quick and easy, and your dedication helps spread awareness.
          &#xD;
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           Step 2: Wear
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Once you’ve registered, keep an eye on your mailbox for your gold shoelaces. When they arrive, swap out your regular laces and go gold for childhood cancer throughout September. Each step you take with those laces on your shoes represents a step towards a brighter future for children with cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Step 3: Share
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  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Now it’s time to spread the word! Share your fundraising page with friends, family, and your social media network. Use the hashtag 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           #CareWearShare
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to connect with others participating in the campaign. Your voice can inspire others to join the cause and amplify our message.
          &#xD;
    &lt;/span&gt;&#xD;
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      &lt;br/&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           Lace Up for Kids by the Numbers
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Since its inception, Lace Up for Kids has made a remarkable impact thanks to the dedication of supporters like you. Here’s a look at what we’ve achieved together:
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    &lt;/span&gt;&#xD;
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  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            250,000 pairs of gold laces
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      &lt;span&gt;&#xD;
        
             worn in all 50 U.S. states.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Over 325 schools, sports teams, and youth organizations
           &#xD;
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      &lt;span&gt;&#xD;
        
             involved.
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      &lt;/span&gt;&#xD;
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            Participants from 20 countries
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      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             around the world.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Over $450,000 raised
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             for breakthrough treatment options for childhood cancer.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
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    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Other Ways to Get Involved in Lace Up for Kids
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Looking to take your involvement to the next level? Here are some exciting ways you can make an even bigger impact:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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           Register as a Team Captain
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Invite your friends and family to join your fundraising efforts. Together, you can create a powerful team dedicated to fighting 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           childhood cancer
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
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      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
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           Get Your Sports Team Involved
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Along with your established fundraiser you can order laces for your entire sports team. Whether you play baseball, basketball, cheer, or football, your team can wear gold laces to show solidarity and raise funds.
          &#xD;
    &lt;/span&gt;&#xD;
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      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Get Your School To Go Gold for Childhood Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Host an informational table at your school to share more about Childhood Cancer Awareness Month and the Lace Up for Kids program. Encourage your classmates to participate and raise awareness together.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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           Smithtown’s Success Story
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           Smithtown, NY
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            shines brightly in the fight against childhood cancer. At Nesaquake Middle School, principal Dan and his team transform the school into a sea of gold shoelaces every September. With 500 students proudly wearing gold, the highlight is a “Go Gold” day filled with fun fundraising booths.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Meanwhile, at Accompsett Elementary School, principal Tim leads the “Change Childhood Cancer” campaign, where students bring in spare change, raising over $1,500!  The school buzzes with creativity and community spirit as students wear their gold laces in unique ways – in their hair, as bracelets, and even as creative shoelace art on their backpacks.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “Smithtown is a very generous community. Our Lace Up for Kids fundraiser empowers our young students to be philanthropic and teaches them the important lesson that you can achieve great things by working together. Whether kids bring in a handful of pennies or a twenty-dollar bill they are able to participate in the fight against childhood cancer.” 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/807F6081-D4E6-4A40-920E-00FEF3E49F6F-240x300.jpg" alt="A group of children are standing in a circle with their shoes on the floor"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           -Timothy Hellmuth, Principal, Accompsett Elementary School 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Unite your school or classroom like Smithtown, NY! Join the Lace Up for Kids campaign this September. Register, wear your gold shoelaces, and help us fund critical cancer research.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-768x192.png" alt="solvingkidscancer.rallybound.org/2025-lace-up-for-kids"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           FAQs About Lace Up for Kids
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           What is Lace Up for Kids?
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;br/&gt;&#xD;
        
            Lace Up for Kids is a fundraising and awareness campaign by Solving Kids’ Cancer. Participants wear gold shoelaces in September to support childhood cancer research. View our
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.canva.com/design/DAFqA-_qKL8/oif_3dRGub5ETo555_wV4Q/view#1" target="_blank"&gt;&#xD;
      
           Campaign Toolkit
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            for more information.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How can I get involved?
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;br/&gt;&#xD;
        
            You can
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
      
           register, fundraise, wear gold laces,
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            and share your efforts on social media.
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      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Where do the funds go?
          &#xD;
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      &lt;br/&gt;&#xD;
      
           Funds raised support breakthrough treatment options for pediatric cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Who can participate in Lace Up for Kids?
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           Anyone can participate! We encourage individuals, families, schools, sports teams, and community organizations to join the cause.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How do I register for Lace Up for Kids?
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;br/&gt;&#xD;
        
            You can register
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
      
           on our website
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            by filling out a simple form. Once registered, you will receive a fundraising page to share with your network.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           When will I receive my gold shoelaces?
          &#xD;
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      &lt;br/&gt;&#xD;
      
           After registering, you will receive your gold shoelaces in the mail. Delivery times may vary, so please allow a week for shipping.
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           What are some fundraising ideas?
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           Fundraising ideas include hosting a bake sale, organizing a charity run or walk, setting up a donation drive, and using social media to spread the word and gather support.
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           How do I share my fundraising page?
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           You can share your fundraising page via email, social media, and word of mouth. Use the hashtag 
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           #CareWearShare 
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           to join the online conversation.
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           How do I track my fundraising progress?
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           Your fundraising page will have a built-in tracker to monitor donations and progress towards your goal. You will receive email notifications as contributions are made.
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           Are donations tax-deductible?
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           Yes, donations to Solving Kids’ Cancer are tax-deductible to the extent permitted by law. Donors will receive a receipt for their contribution.
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           Can I donate without participating in the Lace Up for Kids program?
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           Absolutely! You can make a direct donation on our website to support childhood cancer research.
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           What should I do if I have not received my laces?
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           If you haven’t received your gold shoelaces within two weeks of registering, please contact heroes@solvingkidscancer.org for assistance.
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           How can my school or sports team get involved?
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           Your school or sports team can participate by registering as a group and organizing fundraising events. Hosting an awareness event or sharing information about childhood cancer are also great ways to get involved.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/GET-MY-LACES-300x300.jpg" alt="A girl is sitting on the floor and pointing at her shoes with the words lace up for kids and help fund lifesaving research"/&gt;&#xD;
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           Ready to Join Us?
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            ﻿
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           This September, let’s make a GOLD statement for Childhood Cancer Awareness Month. Show the world our dedication to supporting childhood cancer patients and their families, and our commitment to finding new and innovative treatment options — 
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           because every kid deserves to grow up.
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  &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-768x192.png" alt="A yellow button that says `` register now '' on a white background."/&gt;&#xD;
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      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-4e096b87.png" length="306455" type="image/png" />
      <pubDate>Wed, 06 Aug 2025 19:26:30 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/childhood-cancer-awareness-month-2025</guid>
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      <title>Give the Gift of Hope</title>
      <link>https://www.solvingkidscancer.org/blog/give-the-gift-of-hope</link>
      <description />
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           Ways to Give Back During the Holidays
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           Holiday Fundraiser Ideas to Support Kids with Cancer
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           For most, the holidays mean joy, togetherness, and warm memories by the fire. But for families facing pediatric cancer, this season can feel anything but magical. A cancer diagnosis doesn’t pause for the holidays. Families balance treatment plans, hospital visits, and everyday life while holiday traditions take a backseat. At Solving Kids’ Cancer, every child deserves a future filled with joy, laughter, and holiday cheer. That’s why we’re laser-focused on finding breakthroughs and cures for the most aggressive childhood cancers.
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           This season, YOU can help bring the magic of hope back to these families. Whether planning a holiday fundraiser or looking for fundraising ideas for charities, every action—big or small—makes an impact. Here’s how you can be part of the mission:
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           1. Be a Voice of Hope
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           Your voice matters. Shouting it from the rooftops is optional, but sharing is essential! By joining our online community, you’re helping amplify the urgency of our mission. Share posts, spread awareness, and invite others to join the fight. Every share can lead to another heart moved to action. 
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           &amp;#55357;&amp;#56547; Post this on your feed:
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           Every child deserves a chance to grow up! I’m giving back this holiday season by supporting @SolvingKidsCancer, a non-profit organization dedicated to life-saving research for pediatric cancer. Together, we can bring hope to kids facing cancer. → solvingkidscancer.org
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           Did You Know?
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           Sharing a post on social media can reach over 300 people on average — that’s 300 potential supporters who might not have known about the urgent need for pediatric cancer research!
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           2. Start a Fundraiser in 5 Minutes
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           Got a fun idea? A knack for baking? A flair for running or hosting events? Great — because every creative spark can fuel hope! Starting a fundraiser is so simple with our platform. In just a few clicks, you can raise funds to support life-saving research for kids who need it most.
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           Inspire Others
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           Brandon Perna, creator of That’s Good Sports, turned his passion for sports into hope for kids battling cancer.
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           “I love raising money for SKC because I know every dollar makes a huge impact towards helping one of the worst scenarios any parent can imagine. Once they connected their charity through YouTube, it became incredibly easy for me to create a fundraiser on my channel, and I plan on doing more throughout the year… I can’t think of many things more important than the work they’re doing.”
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            &amp;#55357;&amp;#56493;
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           Tip:
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           Make your holiday fundraiser personal. Tell your audience why you care — it could inspire them to join you!
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           3. Double or Triple Your Donation
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           Did you know your employer might be Santa in disguise? Many companies match employee donations, turning your $50 into $100 — or more! It’s one of the easiest ways to maximize your impact, and it only takes a few minutes to check with your HR department.
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           Why It Matters
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           Matching programs help stretch resources further, ensuring that more research is funded and more children have access to potentially life-saving treatments.
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           4. Make Your Birthday a Celebration of Hope
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           Start next year off right — by giving back! Instead of birthday presents, ask your friends and family to donate to Solving Kids’ Cancer. Their generosity will help fund cutting-edge treatments for kids battling cancer. One meaningful day can make an entire year brighter for these families.
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           Did You Know?
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           Hosting a birthday fundraiser on platforms like Facebook or Instagram is one of the fastest ways to rally support. It’s also a great way to find fundraising ideas for charity that resonate with your network.
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           5. Get Creative with Crafting for a Cause
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           Calling all creators! Whether it’s handmade ornaments, holiday cards, or knitted scarves, you can turn your talent into life-saving support. Plus, crafting together is a great way to involve the kids and teach them about giving back.
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           Audrey’s Angels
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           Audrey was diagnosed with high-risk neuroblastoma when she was just 5 years old. At 11, she began creating beautiful angel ornaments out of soda cans to raise money for childhood cancer nonprofits like Solving Kids’ Cancer. 
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           “Making the angels is an amazing way for me to give back to the community even as a student. I want to support those who have been in the same situation as I have and hope for a better future for children with cancer.”
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            &amp;#55357;&amp;#56481;
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           Creative Idea: Turn your crafting session into a holiday fundraiser! Invite friends to join and donate the proceeds to Solving Kids’ Cancer. Fun + fundraising = double the joy!
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           6. Give a Gift in Memory of a Child
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           Looking for a meaningful gift this holiday season? Give in memory of a child who has lost their battle or in honor of a child still fighting. Your gift will fund research for safer, more effective treatments and bring hope to families facing the unimaginable.
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           A Mother’s Tribute
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           Lara W. honors her son Hans, forever 8, by giving back.
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            “We’ve been through clinical trials ourselves, and we know how vital they are. Giving back helps ensure other families have the same opportunity like us. Charities like Solving Kids’ Cancer fill critical funding gaps that no one else does.”
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            &amp;#55357;&amp;#56481;
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           A Special Touch: Send a holiday card letting someone know you’ve donated in their honor—it’s a heartfelt way to celebrate the season.
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           Make Hope a Holiday Tradition
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           Whether you’re hosting a holiday fundraiser, sharing on social media, or making a gift in memory of a loved one, your actions this holiday season bring us closer to cures. Together, we can create a world where children grow up healthy, happy, and cancer-free.
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           Thank you for joining us in this mission of hope. Let’s make this season truly magical.
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      <pubDate>Mon, 02 Dec 2024 00:21:56 GMT</pubDate>
      <author>kristi@solvingkidscancer.org (Kristi McKay)</author>
      <guid>https://www.solvingkidscancer.org/blog/give-the-gift-of-hope</guid>
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      <title>Ahana’s Story of Strength</title>
      <link>https://www.solvingkidscancer.org/blog/ahanas-story-of-strength-high-risk-neuroblastoma</link>
      <description />
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           Ahana’s Story of Strength with High-Risk Neuroblastoma
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every day, over 1,000 children worldwide are diagnosed with cancer,1 and for many families, that diagnosis means facing an uncertain future. At just 20 months old, Ahana was diagnosed with a rare and aggressive cancer that had already spread through her small body. Her family’s search for life-saving childhood cancer treatments led them from South Africa to Spain and possibly toward a clinical trial in New York. Ahana’s journey shows the importance of supporting organizations like Solving Kids’ Cancer, which works to find, fund, and advocate for advanced treatments that give hope to families fighting against tough-to-treat rare pediatric cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Devastating Diagnosis and a Family’s Determination
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           It all started when Ahana’s family first noticed a small lump on the back of their fun and energetic little girl. They took her to the doctor, hoping for a simple explanation.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ahana-close-up.png" alt="A little boy wearing a pink shirt is smiling for the camera."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Instead, they were told that a large tumor was pressing on her heart, lungs, and spinal cord, affecting her breathing and partially paralyzing her vocal cords. Her father, Aveen, recalls the moment clearly: “We were told that she had a large malignant tumor measuring 15cm in diameter. We were shattered.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The diagnosis was 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/blog/neuroblastoma-in-children"&gt;&#xD;
      
           stage 4 high-risk neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , a rare pediatric cancer that affects around 700-800 children each year in the United States alone.2 Neuroblastoma is especially aggressive and difficult to treat, with only about a 50% survival rate for advanced cases because of the high risk of relapse, even after remission.3 Knowing Ahana would need the best possible childhood cancer treatment, her family made the difficult decision to relocate from South Africa to Spain, leaving behind their home and support network in hopes of giving her a better chance.4
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           A Setback in Spain: The Struggles of Childhood Cancer Treatment
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When they arrived in Barcelona, Ahana’s medical team at Sant Joan de Déu Hospital (SJD) had hoped to remove her tumor through surgery. But within two weeks, new scans showed that the tumor had doubled in size, building up fluid in her lungs and making surgery impossible. Ahana’s doctors quickly turned to a specialized chemotherapy plan to control the cancer’s aggressive growth, and she began her first round, which included a targeted drug called Dasatinib.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           However, just hours after starting treatment, Ahana’s body reacted severely. She lost consciousness, her oxygen levels dropped, and she was rushed to intensive care.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ahana-3-268x300.png" alt="A man and a little girl pose in front of a sign that says sjd pediatric cancer center"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Her mother, Avanya, recalls, “Life support was the only option.” The chemotherapy drug had caused heart damage, and doctors feared she had only hours left. Miraculously, Ahana’s body began to stabilize six hours later, and over the next few days, her heart function gradually improved.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Ahana’s struggle with the drug Dasatinib also shows the urgent need for treatments made just for children. Nearly two-thirds of childhood cancer survivors suffer 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/blog/jacobs-journey-a-childhood-cancer-survivors-story"&gt;&#xD;
      
           long-term side effects from treatments
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            designed for adults, which can harm their growing bodies.5 Child-focused cancer treatments are crucial to give young patients a healthier future without added health complications.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Ahana’s incredible recovery caught the attention of doctors from St. Jude Children’s Research Hospital in the United States. While visiting SJD, they asked if they could study her genetic data, hoping her case could help other children facing similar challenges. Her strength inspired everyone, giving her family renewed hope for the road ahead.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Progress After Surgery and a Race Against Time
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           With additional cycles of chemotherapy, coupled with the drug Lorlatinib to address a mutation they identified, Ahana’s tumor shrank by 50%, making surgery possible. A skilled team of doctors then performed a six-hour operation, successfully removing over 90% of the tumor. Showing incredible resilience, Ahana spent just one day in intensive care before going home four days later.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But even with this progress, Ahana’s journey is far from over. Neuroblastoma has one of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/blog/improving-treatments-for-neuroblastoma"&gt;&#xD;
      
           highest relapse rates of all childhood cancers
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Even when remission is achieved, the cancer often comes back, leaving children with advanced cases, like Ahana’s, with only a 1 in 5 chance of surviving five years post-diagnosis, even with aggressive childhood cancer treatment.6 To reduce this risk, Ahana’s parents began researching options and found hope in a clinical trial at Memorial Sloan Kettering Cancer Center (MSK) in New York.7 This trial, which is the only one of its kind, is testing a cancer vaccine to prevent neuroblastoma from returning — a critical need for children like Ahana.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “Right now, this is our last and only option as it gives us hope for Ahana’s best chance of survival,” Avanya explains. “Time is of the essence as Ahana’s body is being ravaged by the progressing cancer.” Her family is now urgently raising funds to get her into the MSK trial, hoping to provide her with the most promising path to a full recovery.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ahana7-207x300.jpg" alt="A little girl is sitting on a ledge holding a drink."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Power of Community Support
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Ahana’s journey with high-risk neuroblastoma would not be possible without the support of a compassionate community. Friends, family, and even strangers have come together through 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.gofundme.com/f/help-baby-ahana-in-her-fight-against-cancer" target="_blank"&gt;&#xD;
      
           GoFundMe
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and other platforms to help cover the high costs of treatment and travel. The Bluff Athletics Club in South Africa organized a 5km walk/run for Ahana, with over 400 people gathering to show their support and raise funds. “We are endlessly grateful for everyone who has helped us,” Avanya shared, deeply moved by the generosity that has kept them going.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Ahana’s story highlights how essential community support is for families facing childhood cancer. Childhood cancer statistics worldwide show that 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/5-ways-to-support-a-caregiver-during-national-family-caregivers-month"&gt;&#xD;
      
           families with strong support networks
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are more likely to access the care they need, especially for rare and aggressive cancers. Solving Kids’ Cancer is dedicated to helping these families by funding research, connecting them with vital treatments, and advocating for solutions that give children like Ahana the best chance to fight.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Mission of Solving Kids’ Cancer: Putting Kids First
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, our focus is simple: to make sure children with rare pediatric cancers get the attention and care they need. In a world where many needs compete, kids with rare cancers are sometimes left behind in the search for new treatments. We’re here to change that by funding important research and pushing for better treatments, giving real hope to families who need it most.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But our work isn’t just about funding studies. It’s about making sure children get faster access to new therapies, especially for tough cancers like high-risk neuroblastoma. This means helping kids receive treatments sooner, combating disparities that prevent access due to geography, and improving therapies like immunotherapy so they work better for young patients.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When you support Solving Kids’ Cancer, you’re helping families like Ahana’s gain access to life-saving clinical trials and treatments that can save lives. Together, we can make sure that every child has the chance to grow up healthy and strong.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ahana-2-1-150x150.png" alt="A baby in a pink hoodie is holding a watermelon in the snow"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Join Us in the Fight Against Childhood Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Today, you can be part of Ahana’s story and support children around the globe who face similar battles. Every donation to Solving Kids’ Cancer fuels hope, funding the research and treatments that bring us closer to life-saving breakthroughs — 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 World Health Organization: Childhood Cancer – International Childhood Cancer 2024: Reducing the Survival Gap
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.emro.who.int/media/news/international-childhood-cancer-day-2024-reducing-the-survival-gap.html" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.emro.who.int/media/news/international-childhood-cancer-day-2024-reducing-the-survival-gap.html
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 National Library of Medicine – Treatment and Survival of Childhood Neuroblastoma: Evidence from a Population-Based Study in the United States
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6764456/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://pmc.ncbi.nlm.nih.gov/articles/PMC6764456/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 MedicineNet – What Is the Life Expectancy of a Child with Neuroblastoma?
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.medicinenet.com/life_expectancy_of_a_child_with_neuroblastoma/article.htm" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.medicinenet.com/life_expectancy_of_a_child_with_neuroblastoma/article.htm
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4 Southlands Sun News – Little Cancer Fighter Continues to Defy the Odds
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.citizen.co.za/southlands-sun/news-headlines/2024/10/16/little-cancer-fighter-continues-to-defy-the-odds/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.citizen.co.za/southlands-sun/news-headlines/2024/10/16/little-cancer-fighter-continues-to-defy-the-odds/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 National Library of Medicine – Late Effects of Childhood Cancer
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/books/NBK221735/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/books/NBK221735/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           6 National Library of Medicine – PCR-based amplification of circulating RNAs as prognostic and predictive biomarkers – Focus on neuroblastoma
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC5575362/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://pmc.ncbi.nlm.nih.gov/articles/PMC5575362/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           7 Southlands Sun News – Help Bluff toddler receive international lifesaving cancer treatment
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.citizen.co.za/southlands-sun/news-headlines/local-news/2023/12/19/help-bluff-toddler-receive-international-lifesaving-cancer-treatment/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.citizen.co.za/southlands-sun/news-headlines/local-news/2023/12/19/help-bluff-toddler-receive-international-lifesaving-cancer-treatment/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ahana-blog-feature-300x150-7d218961.png" length="129409" type="image/png" />
      <pubDate>Wed, 20 Nov 2024 21:43:44 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/blog/ahanas-story-of-strength-high-risk-neuroblastoma</guid>
      <g-custom:tags type="string">News &amp; Views</g-custom:tags>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ahana-blog-feature-300x150-7d218961.png">
        <media:description>thumbnail</media:description>
      </media:content>
      <media:content medium="image" url="https://irp.cdn-website.com/2bd5ee1b/dms3rep/multi/Ahana-blog-feature-300x150-7d218961.png">
        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>2024 Year-in-Review</title>
      <link>https://www.solvingkidscancer.org/blog/2024-year-in-review-childhood-cancer-research</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2024-Review-blog-Feature-Image.png" alt="A poster for 2024 year in review for solving kids ' cancer"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Advancing Childhood Cancer Research: SKC’s 2024 Milestones
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Dear Friends and Supporters,
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As we look back on 2024, I want to extend my heartfelt thanks to every donor, volunteer, and partner who has stood with us. Because of you, Solving Kids’ Cancer has been able to push forward with groundbreaking research and open new doors to treatments for children facing the toughest cancers. Your support fuels our work and brings hope to families in their most difficult moments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, our mission goes beyond research — it’s about making sure children with cancer are at the forefront of every breakthrough. When so much competes for attention in the medical field, kids with rare cancers can sometimes be overlooked. We’re here to make sure they’re not left behind, focusing on research that leads to real solutions kids can access sooner. This year, we’ve seen exciting progress in immunotherapy, targeted treatments, and personalized care, bringing us closer to a future where more children can overcome cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           New Cancer Breakthroughs in Research
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This year, Solving Kids’ Cancer made significant strides in childhood cancer research. Here are some highlights:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-experiment.webp" alt="A purple icon of a target with an arrow in it."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Advancing Brain Tumor Research:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             With the help of our partners, we’ve made strides in treating high-risk
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/rare-brain-tumors-in-kids"&gt;&#xD;
        
            brain tumors
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
            . Quarterly conferences brought top experts together, setting the stage for new clinical trials and treatments.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Solving Indolent Neuroblastoma:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             This project focuses on developing diagnostic tools and new childhood cancer treatments for slow-growing
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/whats-needed-to-improve-treatments-for-neuroblastoma"&gt;&#xD;
        
            neuroblastoma
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
            . This year, we created a test for ALT biomarkers, established nine patient-derived neuroblastoma models, and identified PF-06821497 as a promising drug to enhance outcomes.
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            New Steps in Immunotherapy:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             We are working to make
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/the-promise-of-immunotherapy"&gt;&#xD;
        
            immunotherapy
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             a stronger option for children with hard-to-treat cancers like medulloblastoma. This year’s research is expected to lead to clinical trials in 2025, moving these treatments closer to young patients.
             &#xD;
          &lt;br/&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Leadership in Collaboration and Advocacy
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Collaboration is key at Solving Kids’ Cancer. We teamed up with global partners and made sure children’s needs were at the center of our efforts:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-global-collaboration-1.webp" alt="A handshake with a globe in the background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Pediatric Brain Tumor Research Network (PBTRN):
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Partnering with Columbia University, we launched this network to connect researchers from around the world, aiming to speed up
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/pediatric-brain-tumors-and-solving-kids-cancers-impact"&gt;&#xD;
        
            brain tumor treatments for children
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
            .
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Advocating for High-Risk Brain Tumor Treatments:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             SKC joined the Pediatric Strategy Forum to push for new therapies for diffuse midline gliomas (DMG), advocating against placebo trials and for innovative childhood cancer treatments targeting SMARCA4 and GD2.
             &#xD;
          &lt;br/&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Shaping Clinical Trial Design:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Our advocacy led the Children’s Oncology Group (COG) to make a landmark decision for trial ANBL2431, which will compare chemo-immunotherapy1 with a reduced transplant regimen. This decision highlights the growing role of patient advocacy in research and treatment protocols.
             &#xD;
          &lt;br/&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Our Research in the Spotlight
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer’s research contributions reached new heights this year through key publications and media features
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-research-1.webp" alt="A magnifying glass is looking at a stack of papers and a graph."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            FDA Approval of IWILFIN:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             After 15 years of effort, we celebrated the FDA’s approval of IWILFIN, a neuroblastoma maintenance therapy. This approval shows the power of long-term advocacy and partnership.
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Innovative GD2BATs Immunotherapy Trial:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             We shared results from a clinical trial using GD2BATs2 — an immunotherapy that equips T cells with antibodies to target cancer cells in neuroblastoma and
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/osteosarcoma-in-children"&gt;&#xD;
        
            osteosarcoma
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
            . The study showed this approach is safe and effective, bringing new hope to families facing these tough cancers.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Influencing Future Clinical Trials:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Our published paper, “To transplant, or not to transplant? That is the question,”3 offered vital insights on using autologous stem cell transplant (ASCT) in high-risk neuroblastoma. By examining evidence and parent views, we encouraged new patient-centered approaches.
             &#xD;
          &lt;br/&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Events That Brought Us Together
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           From fundraising events to community gatherings, we connected with our community throughout the year:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-group-1.webp" alt="A group of people are standing in a circle holding hands."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Comedy Fights Kids’ Cancer:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Hosted by comedian Seth Herzog, this event gave our supporters a night of laughter while raising vital funds for our work.
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Summer Luncheon in the Hamptons:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Our
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="http://" target="_blank"&gt;&#xD;
        
            eighth annual luncheon
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             gathered advocates and donors to celebrate our progress and rally even more backing for research.
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            That’s Good Sports Fundraiser:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             This live-streamed fundraising event during the Broncos vs. Saints game brought sports fans together in a fun way to fuel childhood cancer research.
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Thanks to the incredible commitment of our community, these events reinforced our mission to build a world where no child faces cancer alone.
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Keep Advancing Childhood Cancer Research with Us
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Each child battling cancer deserves a real chance at a cure, and every new discovery brings us one step closer. Your support helps launch new treatments, brings together experts to find solutions, and offers hope to families facing the toughest challenges.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This holiday season, your gift can directly impact these children and families. There’s still so much more to be done, and every dollar will help drive new cancer breakthroughs forward, advancing life-saving work that gives kids the chance they deserve.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Thank you for being part of this journey. Your support is making a difference, one child at a time.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           With deep gratitude,
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Scott-first-name-signature-2eb69227.png" alt="A black and white signature of scott on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Scott Kennedy
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Executive Director &amp;amp; Co-Founder
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;ol&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             National Library of Medicine – Chemotherapy: A New Trend in Cancer Treatment
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC10252089/"&gt;&#xD;
        
            https://pmc.ncbi.nlm.nih.gov/articles/PMC10252089/
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             National Library of Medicine – Targeting refractory/recurrent neuroblastoma and osteosarcoma with anti-CD3xanti-GD2 bispecific antibody armed T cells
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://pubmed.ncbi.nlm.nih.gov/38519053/"&gt;&#xD;
        
            https://pubmed.ncbi.nlm.nih.gov/38519053/
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             National Library of Medicine – To transplant, or not to transplant? That is the question. A patient advocate evaluation of autologous stem cell transplant in neuroblastoma
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://pubmed.ncbi.nlm.nih.gov/35373890/"&gt;&#xD;
        
            https://pubmed.ncbi.nlm.nih.gov/35373890/
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ol&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2024-Review-blog-Feature-Image.png" length="306705" type="image/png" />
      <pubDate>Mon, 11 Nov 2024 02:51:32 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/2024-year-in-review-childhood-cancer-research</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2024-Review-blog-Feature-Image.png">
        <media:description>thumbnail</media:description>
      </media:content>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2024-Review-blog-Feature-Image.png">
        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>2024 Lace Up for Kids Recap</title>
      <link>https://www.solvingkidscancer.org/blog/lace-up-for-kids-2024-recap</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/laces-recap-blog-banner.png" alt="A collage of images with a yellow butterfly in the middle."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lace Up for Kids: Your Impact on Childhood Cancer Research
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, our mission has always been driven by hope — hope for better treatments, hope for breakthroughs, and most importantly, hope for every child fighting cancer. This year’s Lace Up for Kids campaign was nothing short of inspiring. Together, we’ve raised over $264,000 across the entire campaign, funding innovative childhood cancer research and providing more treatment options for children in need.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           From coast to coast, nearly 4,000 participants have stepped up to lace up their gold shoelaces and make a difference. Whether it was through schools, sports teams, or community groups, the show of support has been overwhelming throughout the years. Over 7,823 donations have been made to accelerate new treatments, and the hashtag #CareWearShare has been used 13,864 times, spreading the message far and wide!
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/bowl-of-laces.png" alt="A glass jar filled with gold ribbons for childhood cancer awareness"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Your Participation Means the World
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To every student, teacher, athlete, parent, and friend who participated in this year’s Lace Up for Kids, we want you to know how deeply grateful we are for your help in raising critical children’s cancer research funds. Whether you walked miles, ran races, or simply shared the cause with your network, each act of kindness had a ripple effect.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           With 212,500 gold shoelaces distributed, this childhood cancer fundraiser’s message of hope has reached far and wide. Some schools have organized entire days dedicated to childhood cancer awareness, with classrooms buzzing with excitement and determination. Many participants have told us how they felt connected to something larger than themselves, knowing that they were raising funds for children in the fight of their lives.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stories That Touched Our Hearts
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Throughout this campaign, we were fortunate to hear the stories behind the participation. Parents told us about lacing up in honor of their children who are fighting cancer. Teachers shared about students who learned valuable lessons on compassion and empathy by taking part in Lace Up for Kids. These moments remind us of why we continue this important work.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           One story that stands out is from Erin Martin, a 14-year-old student from San Antonio, Texas, who has been actively raising awareness for childhood cancer in 2021. Since starting her efforts, Erin and her friends have shared their passion for helping children with their classmates and community, earning a plaque that now proudly hangs in their school lobby.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           More Than Just Gold Shoelaces
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           What makes Lace Up for Kids so special is that it’s about more than just raising money—it’s about raising awareness and standing in solidarity with families facing unimaginable challenges. Every gold lace worn is a symbol of hope. When we go gold for childhood cancer, we remind the world that cancer isn’t something we can ignore; it’s a battle we’re determined to win.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The Smithtown Schools, for example, have consistently gone above and beyond. Over the years, students and staff have organized school-wide cancer awareness days and fundraising challenges, encouraging students to lace up their gold shoelaces and show support for pediatric cancer patients. Their efforts have helped their community foster a deeper understanding of the fight children with cancer face every day.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           What Your Support Achieves
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Because of you, the funds raised this year will go directly toward advancing life-saving research and treatments for the most aggressive childhood cancers. Your contributions support projects like immunotherapy research1 and clinical trials for less toxic therapies, giving children hope for recovery without the harsh side effects of traditional treatments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           One of our key initiatives is funding the first-ever clinical trials for ETMR (Embryonal Tumor with Multilayered Rosettes), a rare and deadly pediatric brain tumor. Thanks to your support, we’re not only providing access to cutting-edge trials but also driving the development of new treatment protocols that could transform pediatric cancer care.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Support Childhood Cancer Research Year-Round
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Even though Lace Up for Kids is over, there are many ways you can go gold for childhood cancer throughout the year. Here are a few simple, practical ways to stay involved:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Monthly Giving:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Set up a 
           &#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate?rbref=blog_laceup_thankyou&amp;amp;utm_campaign=laces&amp;amp;utm_source=blog_laceup_thankyou&amp;amp;utm_medium=blog&amp;amp;utm_content=laces_thankyou_blog" target="_blank"&gt;&#xD;
        
            recurring donation
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
             to make a consistent impact. Even small monthly contributions add up over time and help sustain critical research projects.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Host a Childhood Cancer Fundraiser:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Whether it’s a bake sale, garage sale, or online donation drive, 
           &#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc" target="_blank"&gt;&#xD;
        
            you can raise funds in your community
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
             to support groundbreaking research for kids with cancer.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Spread Awareness:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Share stories from Solving Kids’ Cancer and the impact of ongoing research on your social media. Raising awareness is just as powerful as fundraising and helps spread the message.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Employer Matching Gifts:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Check if your employer offers a matching gift program. This simple step can double or even triple the impact of your donation.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Volunteer Your Time:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Explore opportunities to get involved locally by volunteering at awareness events or helping to spread the word about childhood cancer research.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Stay Informed:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Sign up for our newsletter to keep up to date with the latest in 
           &#xD;
      &lt;/span&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            childhood cancer research
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
             and learn about new ways to support children and families battling cancer.
           &#xD;
      &lt;/span&gt;&#xD;
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           By staying active and engaged, you’re helping to fuel research that gives children hope for a brighter, healthier future. 
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           Missed Laces? You Can Still Make an Impact!
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           If you couldn’t join us for Lace Up for Kids, there’s still a way to be part of the mission. Your donation supports groundbreaking childhood cancer research and gives hope to children and their families. Every contribution, big or small, moves us closer to a future without childhood cancer — 
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           because every kid deserves to grow up.
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  &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate?rbref=blog_laceup_thankyou&amp;amp;utm_campaign=laces&amp;amp;utm_source=blog_laceup_thankyou&amp;amp;utm_medium=blog&amp;amp;utm_content=laces_thankyou_blog" target="_blank"&gt;&#xD;
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           Source:
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           1 Immunotherapy of Neuroblastoma: Facts and Hopes – 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9344822/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9344822/
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      <pubDate>Tue, 01 Oct 2024 14:00:21 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/lace-up-for-kids-2024-recap</guid>
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      <title>Stories of Impact: Erin Martin</title>
      <link>https://www.solvingkidscancer.org/blog/lace-up-for-kids-stories-erin-martin</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Gold Laces for Childhood Cancer Awareness Month: Erin’s Story
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            ﻿
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           Erin Martin’s journey began with a simple pair of gold shoelaces, but it has grown into a powerful mission to make a difference in the fight against childhood cancer. At just 14 years old, Erin has dedicated herself to raising awareness and funds for pediatric cancer research through Solving Kids’ Cancer’s annual Lace Up for Kids campaign.
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           Why is her work so crucial? Because every day, 47 children in the United States are diagnosed with cancer,1 and despite advances in research, cancer remains the leading cause of death by disease for children.1 Erin’s mission is to change that, one pair of gold shoelaces at a time.
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           And she’s not alone. Through the Lace Up for Kids campaign, 150,000 pairs of gold laces have been worn in all 50 U.S. states, and over 250 schools, sports teams, and youth organizations have joined the cause. This global movement has reached participants in 20 countries and raised over $250,000 to support breakthrough treatment options for childhood cancer.
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           To inspire others and learn firsthand what drives Erin to keep going, we spoke with her about her journey, the challenges she faced, and the impact she’s determined to make.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Erin-1.png" alt="A young girl is standing in a parking lot with her hands in her pockets."/&gt;&#xD;
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           How It All Started
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           Three years ago, Erin was introduced to the Lace Up for Kids campaign, and she was instantly hooked. What began as a simple program activity soon became a deeply personal mission. “I first got involved in Lace Up for Kids through a program, but even after it ended, I couldn’t stop,” Erin shared. “Not many kids my age are aware of what’s going on around them, and I wanted to change that.”
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            Every September, during
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    &lt;a href="/blog/childhood-cancer-awareness-month-2024"&gt;&#xD;
      
           Childhood Cancer Awareness Month
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           , Erin would hand out the campaign’s special gold shoelaces to her classmates, encouraging them to wear the laces and show their support. “The most rewarding part of this journey is sharing it with my friends,” Erin said with a smile. “We even made my middle school an official ambassador for the campaign — we have a plaque in the lobby now.”
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           The Mission Behind Lace Up for Kids
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           Lace Up for Kids is more than just a  childhood cancer fundraiser  — it’s a movement that unites communities in support of children battling cancer. The gold shoelaces symbolize the gold ribbon, the international sign of Childhood Cancer Awareness. By wearing these laces, you’re making a visible statement of care and helping to advance lifesaving research.
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            ﻿
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           Solving Kids’ Cancer focuses on the toughest childhood cancers—those that are the most difficult to treat and have the fewest options. SKC’s mission is to discover, fund, and advocate for next-generation treatments that can offer hope where it’s needed most. Campaigns like Lace Up for Kids are a big part of this mission, bringing people together to make a real difference. For Erin, being part of this campaign means joining something bigger—something that can change the future for kids fighting cancer.
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           Juggling School, Hobbies, and Advocacy
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           Erin’s life is busy — like most teens her age — but she’s found a way to balance everything. From staying on top of her schoolwork and enjoying pageantry to spending time with her friends, Erin manages it all while remaining committed to her advocacy work. She’s motivated by a mantra she holds close: “One day or day one, you decide” a quote from Paulo Coelho. For Erin, it’s a reminder that every day is a chance to start something new and make progress, whether it’s in her studies or her mission to raise awareness for childhood cancer.
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            ﻿
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           “I use a dry-erase board to keep track of everything,” Erin explained. “Getting my schoolwork done sooner gives me more time after school to volunteer and work on projects like Lace Up for Kids.” Her disciplined approach, guided by her mantra, helps her manage her commitments while making a real difference in the fight against childhood cancer.
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           Overcoming Challenges and Staying Motivated
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           Even though Erin is a natural leader, she admits that advocating for childhood cancer isn’t always easy. “I get nervous, especially when I’m asking people for support,” Erin confessed. “But I remind myself that the worst thing they can say is ‘no,’ and that’s okay.”
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           Her family and friends play a huge role in her success, helping her pass out shoelaces and promote the cause. “They’re my biggest supporters in everything I do,” Erin said gratefully. She’s seen the impact of these small gestures firsthand. “Wearing these laces is a small thing, but it means a lot,” she shared. “It’s a way to show kids with cancer that they aren’t alone in their fight.”
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           Tips from Erin: How to Get Involved and Make a Difference
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           Erin’s journey in childhood cancer awareness has been nothing short of inspiring. Here’s her personal advice for making a real impact.
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            Start Small:
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             You don’t have to do something huge right away. Start by talking to your friends and family about the cause and see how they can help.
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            Be Bold:
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             Don’t be afraid to ask for support. It can be nerve-wracking, but remember, the worst thing that can happen is someone says ‘no.’
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            Stay Organized:
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             Find a system that works for you, such as a planner, an app, or a simple to-do list. Staying organized helps balance your commitments and ensures you can dedicate time to what matters most.
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            Get Your Community Involved:
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             Encourage others in your community — at school, work, or within local organizations — to join the cause. Building a supportive network amplifies your impact and brings more people together for the mission.
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            Keep Going:
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             Even if it gets tough, don’t give up. Remember why you started and keep pushing forward.
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           Looking Ahead: Erin’s Vision for the Future
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           Erin isn’t stopping here — her ambitions are growing just as quickly as her impact. She envisions organizing a grand gala, a night where people come together, dressed to the nines, united by the common goal of raising substantial funds for childhood cancer research. For Erin, this event wouldn’t just be another childhood cancer fundraiser; it would be a symbol of hope and a testament to the strength of communities rallying together.
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           But Erin’s vision extends beyond glamorous events. She’s determined to make a lasting impact by influencing legislation and advocating for increased government funding for pediatric cancer research. “There are kids like me and even younger who are going through cancer,” she reflected, understanding the urgency of her mission. Her goal is to secure more funding through legislative action so that fewer families have to rely on grassroots fundraising efforts. “If I can do something, anything, to help, then I’ll do it,” she adds, showing the resolve that drives her mission.
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           Join Erin and Lace Up for Kids
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           Like Erin, who started with a simple pair of gold laces and a big heart, you too can make a difference in the lives of children battling cancer. This September during Childhood Cancer Awareness Month, join Lace Up for Kids to take a stand and help ensure that no child has to face cancer alone — 
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           because every kid deserves to grow up
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           .
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  &lt;a href="https://solvingkidscancer.org/blog/childhood-cancer-awareness-month-2024/" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Register-Today-Button+%281%29.png" alt="A yellow button that says `` register today '' on a white background."/&gt;&#xD;
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           If you can’t join the campaign, consider making a 
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    &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            donation to cancer research
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            to support the ongoing fight against childhood cancer.
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           Source:
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           1 Childhood Cancer Fact Library – 
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    &lt;a href="https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/" target="_blank"&gt;&#xD;
      
           https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/
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      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Erin+Feature+image.png" length="235535" type="image/png" />
      <pubDate>Mon, 02 Sep 2024 09:21:37 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/lace-up-for-kids-stories-erin-martin</guid>
      <g-custom:tags type="string" />
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      <title>Lace Up for Kids 2024</title>
      <link>https://www.solvingkidscancer.org/copy-of-lace-up-for-kids-2024</link>
      <description>Lace Up for Kids and fight Childhood Cancer!</description>
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           Childhood Cancer Awareness Month: Lace Up for Kids 2025
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-4e096b87.png" alt="A poster for lace up for kids with a butterfly on it. https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids"/&gt;&#xD;
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           Every year, over 
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           400,000 children worldwide
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            receive the heart-wrenching diagnosis of cancer. This staggering number reminds us of the crucial need for continued awareness, research, and support. This September, during 
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           Childhood Cancer Awareness Month
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           , we invite you to join Solving Kids’ Cancer’s Lace Up for Kids program and make a difference. Together, we can shine a light on the realities of childhood cancer and emphasize the importance of life-saving research.
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           What is Lace Up for Kids?
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           Lace Up for Kids is more than just a campaign; it’s a movement! Launched in 2017, this initiative has united communities across the globe to raise awareness and funds for pediatric cancer research. By simply swapping your regular shoelaces for our special gold laces, you can show your support and help drive change. The power of this program lies in its simplicity and the heartfelt commitment of individuals like you.
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  &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-768x192.png" alt="A yellow button that says `` register now '' on a white background."/&gt;&#xD;
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           How to Participate in Lace Up for Kids
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           Getting involved in Lace Up for Kids is fun and easy! Follow these three simple steps to make a big impact:
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           Step 1: Care
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           First, 
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           register for Lace Up for Kids
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            and create your personal childhood cancer fundraiser page. This is your opportunity to share your story, set your fundraising goal, and show why this cause matters to you. It’s quick and easy, and your dedication helps spread awareness.
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           Step 2: Wear
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           Once you’ve registered, keep an eye on your mailbox for your gold shoelaces. When they arrive, swap out your regular laces and go gold for childhood cancer throughout September. Each step you take with those laces on your shoes represents a step towards a brighter future for children with cancer.
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           Step 3: Share
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           Now it’s time to spread the word! Share your fundraising page with friends, family, and your social media network. Use the hashtag 
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           #CareWearShare
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            to connect with others participating in the campaign. Your voice can inspire others to join the cause and amplify our message.
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           Lace Up for Kids by the Numbers
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  &lt;p&gt;&#xD;
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           Since its inception, Lace Up for Kids has made a remarkable impact thanks to the dedication of supporters like you. Here’s a look at what we’ve achieved together:
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  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            250,000 pairs of gold laces
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             worn in all 50 U.S. states.
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            Over 325 schools, sports teams, and youth organizations
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             involved.
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            Participants from 20 countries
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             around the world.
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            Over $450,000 raised
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             for breakthrough treatment options for childhood cancer.
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           Other Ways to Get Involved in Lace Up for Kids
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    &lt;span&gt;&#xD;
      
           Looking to take your involvement to the next level? Here are some exciting ways you can make an even bigger impact:
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           Register as a Team Captain
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Invite your friends and family to join your fundraising efforts. Together, you can create a powerful team dedicated to fighting 
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           childhood cancer
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           .
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           Get Your Sports Team Involved
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  &lt;p&gt;&#xD;
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           Along with your established fundraiser you can order laces for your entire sports team. Whether you play baseball, basketball, cheer, or football, your team can wear gold laces to show solidarity and raise funds.
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           Get Your School To Go Gold for Childhood Cancer
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  &lt;p&gt;&#xD;
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           Host an informational table at your school to share more about Childhood Cancer Awareness Month and the Lace Up for Kids program. Encourage your classmates to participate and raise awareness together.
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           Smithtown’s Success Story
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           Smithtown, NY
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            shines brightly in the fight against childhood cancer. At Nesaquake Middle School, principal Dan and his team transform the school into a sea of gold shoelaces every September. With 500 students proudly wearing gold, the highlight is a “Go Gold” day filled with fun fundraising booths.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Meanwhile, at Accompsett Elementary School, principal Tim leads the “Change Childhood Cancer” campaign, where students bring in spare change, raising over $1,500!  The school buzzes with creativity and community spirit as students wear their gold laces in unique ways – in their hair, as bracelets, and even as creative shoelace art on their backpacks.
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           “Smithtown is a very generous community. Our Lace Up for Kids fundraiser empowers our young students to be philanthropic and teaches them the important lesson that you can achieve great things by working together. Whether kids bring in a handful of pennies or a twenty-dollar bill they are able to participate in the fight against childhood cancer.” 
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/807F6081-D4E6-4A40-920E-00FEF3E49F6F-240x300.jpg" alt="A group of children are standing in a circle with their shoes on the floor"/&gt;&#xD;
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           -Timothy Hellmuth, Principal, Accompsett Elementary School 
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           Unite your school or classroom like Smithtown, NY! Join the Lace Up for Kids campaign this September. Register, wear your gold shoelaces, and help us fund critical cancer research.
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            ﻿
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  &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-768x192.png" alt="solvingkidscancer.rallybound.org/2025-lace-up-for-kids"/&gt;&#xD;
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           FAQs About Lace Up for Kids
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  &lt;p&gt;&#xD;
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           What is Lace Up for Kids?
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        &lt;br/&gt;&#xD;
        
            Lace Up for Kids is a fundraising and awareness campaign by Solving Kids’ Cancer. Participants wear gold shoelaces in September to support childhood cancer research. View our
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    &lt;a href="https://www.canva.com/design/DAFqA-_qKL8/oif_3dRGub5ETo555_wV4Q/view#1" target="_blank"&gt;&#xD;
      
           Campaign Toolkit
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            for more information.
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           How can I get involved?
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            You can
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    &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
      
           register, fundraise, wear gold laces,
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            and share your efforts on social media.
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           Where do the funds go?
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           Funds raised support breakthrough treatment options for pediatric cancer.
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           Who can participate in Lace Up for Kids?
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           Anyone can participate! We encourage individuals, families, schools, sports teams, and community organizations to join the cause.
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           How do I register for Lace Up for Kids?
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            You can register
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    &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
      
           on our website
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            by filling out a simple form. Once registered, you will receive a fundraising page to share with your network.
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           When will I receive my gold shoelaces?
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           After registering, you will receive your gold shoelaces in the mail. Delivery times may vary, so please allow a week for shipping.
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           What are some fundraising ideas?
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           Fundraising ideas include hosting a bake sale, organizing a charity run or walk, setting up a donation drive, and using social media to spread the word and gather support.
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           How do I share my fundraising page?
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           You can share your fundraising page via email, social media, and word of mouth. Use the hashtag 
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    &lt;strong&gt;&#xD;
      
           #CareWearShare 
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           to join the online conversation.
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           How do I track my fundraising progress?
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           Your fundraising page will have a built-in tracker to monitor donations and progress towards your goal. You will receive email notifications as contributions are made.
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           Are donations tax-deductible?
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      &lt;br/&gt;&#xD;
      
           Yes, donations to Solving Kids’ Cancer are tax-deductible to the extent permitted by law. Donors will receive a receipt for their contribution.
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    &lt;/span&gt;&#xD;
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           Can I donate without participating in the Lace Up for Kids program?
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      &lt;br/&gt;&#xD;
      
           Absolutely! You can make a direct donation on our website to support childhood cancer research.
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           What should I do if I have not received my laces?
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    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           If you haven’t received your gold shoelaces within two weeks of registering, please contact heroes@solvingkidscancer.org for assistance.
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How can my school or sports team get involved?
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           Your school or sports team can participate by registering as a group and organizing fundraising events. Hosting an awareness event or sharing information about childhood cancer are also great ways to get involved.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/GET-MY-LACES-300x300.jpg" alt="A girl is sitting on the floor and pointing at her shoes with the words lace up for kids and help fund lifesaving research"/&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           Ready to Join Us?
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    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This September, let’s make a GOLD statement for Childhood Cancer Awareness Month. Show the world our dedication to supporting childhood cancer patients and their families, and our commitment to finding new and innovative treatment options — 
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    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/2025-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-768x192.png" alt="A yellow button that says `` register now '' on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-4e096b87.png" length="306455" type="image/png" />
      <pubDate>Mon, 26 Aug 2024 15:51:49 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/copy-of-lace-up-for-kids-2024</guid>
      <g-custom:tags type="string">News &amp; Views,</g-custom:tags>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-4e096b87.png">
        <media:description>thumbnail</media:description>
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        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>Smithtown Goes Gold for Childhood Cancer</title>
      <link>https://www.solvingkidscancer.org/blog/lace-up-for-kids-smithtown</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Accompesett-lids.jpg" alt="A group of children are posing for a picture in a hallway."/&gt;&#xD;
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           Smithtown Goes Gold for Childhood Cancer Awareness Month!
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           In Smithtown, New York, gold shoelaces are more than just a fashion statement — they’re a symbol of hope and unity. Every September, the town transforms into a vibrant celebration of community spirit and determination to fight childhood cancer.
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           September is Childhood Cancer Awareness Month and Pediatric Cancer Awareness Month, a time dedicated to shining a light on the fight against childhood cancer. Pediatric cancer is the number one cause of death by disease in children,1 but research for childhood cancer is severely underfunded. In fact, less than 4% of the National Cancer Institute’s budget goes to pediatric cancer research.2 Even those who survive treatments often face long-term health problems due to the harsh therapies used today.
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            Every September, the
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    &lt;a href="https://solvingkidscancer.rallybound.org/2024-lace-up-for-kids" target="_blank"&gt;&#xD;
      
           Lace Up for Kids
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    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            campaign, by Solving Kids’ Cancer, helps spread awareness and fund lifesaving cancer research to make new, better treatments possible for children. We spoke with Principal Dan from Nesaquake Middle School and Principal Tim from Accompsett Elementary School to learn more about how their schools are leading the charge during this important month.
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           Nesaquake Middle School: A Burst of Gold
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           At Nesaquake Middle School, Principal Dan and his team have turned September into a golden spectacle. With about 500 students, the entire school transforms into a sea of gold shoelaces, showcasing their solidarity. The fall sports teams, including football and field hockey, rock gold laces in their gear, creating a powerful visual statement on the field.
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            “We pick a day, usually a Friday in September where we go gold for pediatric cancer, and we tell everybody in the school to wear yellow or gold,” said Dan. “During lunch periods, a table is set up with information from Solving Kids’ Cancer, and students staff the table, collecting donations of any amount.” Social media comes alive with posts tagged
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           #LaceUpforKids
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    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ,
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           #CareWearShare
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           , and
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    &lt;strong&gt;&#xD;
      
           #GoGold
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           , spreading their message far and wide.
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           In addition to the school event, September is also the time for their welcome back street fair on a Friday night. Dan and his students set up a booth at the fair, where parents and other attendees have the opportunity to donate and learn more about Solving Kids’ Cancer. “These combined efforts drive awareness and fundraising hard for that one day, and all proceeds from the day and night are sent to Solving Kids’ Cancer,” shared Dan.
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           Accompsett Elementary School: Small Change, Big Impact
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            At Accompsett Elementary School, Principal Tim leads the “Change Childhood Cancer” campaign with boundless enthusiasm. When the district first signed onto the Lace Up for Kids campaign, each school was given the freedom to integrate it into their activities in their own way. Inspired by how
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           Solving Kids’ Cancer tackles the most challenging childhood cancers,
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            Tim and his team embraced the campaign with a mindset rooted in the belief that “many hands make light work.”
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           The concept behind “Change Childhood Cancer” is simple yet powerful: students bring in spare change, and these collective contributions result in significant funds raised each year. Last year alone, they raised over $1,500. The school buzzes with creative displays of gold laces — in hair, as necklaces, and, of course, on shoes. Their efforts are a fantastic example of cancer research fundraising in action.
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           Tim shared, “Smithtown is a very generous community. Our Lace Up for Kids cancer fundraiser empowers our young students to be philanthropic and teaches them the important lesson that you can achieve great things by working together. Whether kids bring in a handful of pennies or a twenty-dollar bill, they can participate in the fight against pediatric cancer.”
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           Lacing Up Together: Community Spirit in Action
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           The campaign is a true community effort, with parents and the PTA playing crucial roles in promoting pediatric cancer awareness month. “Our PTA is amazing. They help organize events, manage collections, and spread the word through their networks,” said Tim. Parents also contribute by coordinating activities and ensuring everything runs smoothly. Daily announcements keep the campaign at the forefront of everyone’s minds, and weekly emails update families on progress and upcoming events. Vibrant social media posts highlight individual and group efforts, fostering a sense of shared purpose and accomplishment.
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           Local businesses also get involved by contributing resources and support, adding an extra layer of community engagement. Tim added, “We work with one of the local banks here that have change machines. They usually charge to get change converted, but they waive the fees for us, which helps us maximize our fundraising efforts.”
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           The Smithtown community’s dedication and creativity in supporting the Lace Up for Kids campaign is nothing short of amazing. From students to local businesses, everyone pitches in, creating a fun and united effort. Their combined energy not only raises vital funds for cancer research but also brings everyone closer together. It’s proof that when a community bands together, they can make a big difference in the fight against childhood cancer.
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           Get Your School Community Laced Up for Kids!
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           Want your school to join the fun and make a difference? Here are some tips to get started:
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            Register Early:
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            Sign up your school for the Lace Up for Kids campaign well in advance to ensure you have enough time to plan and organize.
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            Promote School-Wide Participation:
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             Encourage students, teachers, and staff to get involved by wearing gold shoelaces and spreading the word.
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            Organize Fun Events:
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             Plan engaging activities like bake sales, car washes, and sports events to raise funds and awareness.
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            Use Social Media:
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             Share your school’s efforts on social media using hashtags like
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            #LaceUpforKids
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             ,
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            #CareWearShare
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             , and
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            #GoGold
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             to connect with others and amplify your message.
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            Engage Local Businesses:
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             Partner with local businesses for donations, prizes, and matching funds to boost your fundraising efforts.
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            Create a Buzz:
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            Use daily announcements, emails, and posters to keep everyone informed and excited about upcoming events and progress.
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            Get Creative:
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            Encourage students to come up with unique ways to wear their gold laces and display their support, whether in their hair, as necklaces, or on their shoes.
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            Involve Parents and PTA:
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             Enlist the help of parents and the PTA to coordinate events, manage collections, and spread the word through their networks.
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            Highlight Achievements:
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            Celebrate and share your school’s successes with the community to inspire continued participation and support.
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           Lace Up to Support Childhood Cancer Research
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            Smithtown, NY, stands as a testament to what can be achieved when a community comes together for a common cause. Inspired by their story? You too can make a difference! Join the Lace Up for Kids campaign this September during Childhood Cancer Awareness Month. Register today, wear your gold shoelaces, and help us raise funds for critical cancer research and a cure for childhood cancer. Together, we can support childhood cancer patients and their families — because
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           Every Kid Deserves to Grow Up!
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           Sources:
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             Key Statistics for Childhood Cancers –
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      &lt;a href="https://www.cancer.org/cancer/types/cancer-in-children/key-statistics.html"&gt;&#xD;
        
            https://www.cancer.org/cancer/types/cancer-in-children/key-statistics.html
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             Childhood Cancer Fact Library –
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      &lt;a href="https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/"&gt;&#xD;
        
            https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/
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      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/blog-circle-of-kids-with-laces.jpg" length="605695" type="image/jpeg" />
      <pubDate>Thu, 08 Aug 2024 03:59:49 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/lace-up-for-kids-smithtown</guid>
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    <item>
      <title>Osteosarcoma Survivor Dr. Kurt Weiss</title>
      <link>https://www.solvingkidscancer.org/blog/osteosarcoma-survivor-dr-kurt-weiss</link>
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           Osteosarcoma Survivor to Surgeon: Dr. Kurt Weiss’ Story
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           At age 15, Dr. Kurt Weiss was a typical teenager—active, ambitious, and full of dreams about football, college, and mountain climbing. However, during a football practice, a sudden, severe pain in his leg changed everything. His mother insisted he visit the doctor, even suggesting she might cancel his mountain climbing trip with friends if he didn’t. 
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           It was a good thing she did. The doctor’s visit led to the shocking diagnosis: osteosarcoma, a rare and aggressive bone cancer. Faced with a life-threatening illness, Dr. Weiss transformed his battle into a mission to save others, demonstrating an extraordinary journey of resilience and purpose. 
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           In honor of 
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           Bone Cancer &amp;amp; Sarcoma Awareness Month
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           , we’re sharing Dr. Kurt Weiss’s story to highlight the importance of bold innovation and relentless pursuit of knowledge in treating and curing the most fatal pediatric cancers.
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           What is Osteosarcoma?
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           Osteosarcoma is a childhood bone tumor that typically forms in the long bones of the arms and legs. It often affects children and adolescents and is more common in males than females. Each year in the United States, doctors diagnose about 12,000 people with sarcoma, with only 500 to 700 cases being osteosarcoma.1 Osteosarcoma symptoms often include pain and swelling in the affected area, which can easily be mistaken for sports injuries or growing pains, as was the case with Dr. Weiss. 
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           The survival rate for osteosarcoma is between 60% and 70%,1 making it a tough battle for many young patients, and treatment can often take a toll on patients both physically and mentally. Standard osteosarcoma treatment usually involves a combination of surgery and chemotherapy. Despite aggressive treatment, the disease often returns, as it did with Dr. Weiss. His cancer spread to his lungs three times, leading to a grim prognosis.
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           Life-Saving Clinical Trial
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           In 1990, Dr. Weiss joined a cutting-edge clinical trial at The University of Texas MD Anderson Cancer Center. The researchers there had created a new immune-based treatment to target and destroy stubborn bone tumor cells. This experimental approach worked and saved Kurt’s life. Reflecting on the experience, he shared, “Miraculously, the experimental treatment saved my life and taught me emphatically that sarcoma medical research and clinical trials save lives.” This life-changing trial underscored the vital importance of ongoing research and innovation in the fight against cancer.
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           Turning Point: The Decision to Amputate
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           Although the clinical trial saved his life, Dr. Kurt Weiss still faced relentless infections and setbacks from his original cancer treatments. “I was on the operating table an average of once every three months for seven years,” he recalled. 
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           Despite the numerous surgeries, infections persisted, and Dr. Weiss’ quality of life was severely impacted. He was a junior in college, struggling to keep up with his studies and daily activities due to the constant medical interventions. The situation reached a point where the recurring infections and surgeries became unsustainable.
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           After a particularly severe infection, he made a brave decision: to amputate his leg above the knee. “I needed to get on with my life and have one more procedure that would amount to a ‘one and done,’” Dr. Weiss explained. This pivotal moment was more than a medical decision; it was a declaration of his determination to live life fully and pursue his dreams despite the physical loss.
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           Embracing the Challenge of a New Reality
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           The decision to amputate was not made lightly. It involved numerous discussions with his medical team and his family. The goal was to improve his overall quality of life and put an end to the endless cycle of osteosarcoma treatments, surgeries, and infections. The surgery was a success, and Dr. Kurt Weiss quickly adapted to his new reality. He focused on rehabilitation and learning to use a prosthetic leg.
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           After the amputation, Dr. Weiss’ life took on a new direction. He was determined to not let the loss of his leg define him. Instead, he used it as a motivation to push forward. His ability to overcome such a significant physical challenge became a cornerstone of his character and a source of inspiration for others. He finished his finals at the University of Notre Dame, and even marched as the president of the Notre Dame band at the 1996 Orange Bowl, demonstrating his resilience and unwavering spirit.
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           Journey to Becoming a Surgeon-Scientist
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           After Dr. Kurt Weiss graduated from Notre Dame, he enrolled in Jefferson Medical College (now the Sidney Kimmel Medical College), pursuing medicine inspired by the compassionate care he received during his treatment. Initially aiming for pediatric oncology, he soon realized that the emotional toll of the field was too great for him. “I recognized that it wasn’t going to be the path forward for me, and that was disappointing,” he said. 
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           He discovered his true calling in surgical oncology. “I needed to be the one who was physically going in and removing cancer. That is just the way I was built,” he explained. The drive was fueled by his desire to physically remove cancer from patients’ bodies, just as his doctors had done for him. In 2003, he earned his medical degree and later joined the surgical team at the University of Pittsburgh Medical Center (UPMC), along with Dr. Mark Goodman — the same surgeon who had treated him.
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           Career Achievements and Contributions
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           Now an osteosarcoma surgeon and researcher at UPMC Hillman Cancer Center and an associate professor at the University of Pittsburgh, Dr. Weiss dedicates his life to finding a cure for sarcoma. His typical week includes time in the operating room, seeing patients, and conducting groundbreaking research, allowing him to make significant contributions both in patient care and scientific discovery.
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           But his contributions don’t stop here. Recognizing the need for more research and support for sarcoma patients, Dr. Weiss helped establish Pittsburgh Cure Sarcoma (PCS), an advocacy group dedicated to increasing awareness and raising research funds for sarcoma. What started as a small group of passionate individuals has grown into a significant force in the sarcoma community. “We’ve been very successful,” Dr. Weiss noted. “All of this momentum has been building over the past decade. We have a community of scientists constantly working on projects right in Pittsburgh, and we put our funding to good use.”
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           To date, PCS has awarded more than $2 million in sarcoma research grants to regional institutions, significantly advancing the field and providing hope for better osteosarcoma treatment options. The group’s efforts have greatly contributed to advancements in osteosarcoma treatment and research.
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            ﻿
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           Empathy in Practice: Connecting with Patients
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           Dr. Kurt Weiss‘ personal battle with osteosarcoma gives him a profound empathy for his patients. He knows their fears, their pain, and their hopes because he has lived them. “When a patient is undergoing a type of chemotherapy that I myself underwent, I know just a little bit more about the fear, anxiety, and other challenges the patient may be experiencing,” he shared. This empathy allows him to connect with his patients on a deeper level, providing them with not only medical care but also emotional support.
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           His story and experiences provide a deeper connection with his patients, helping them navigate their journeys with a sense of understanding and hope. Providing this level of care comes naturally to Dr. Weiss, who acknowledges the entire team at UPMC for their role in patient care. “It takes our entire team to take care of the patients I see — many of whom have a severe disease,” he said.
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           Get Involved This Bone Cancer and Sarcoma Awareness Month
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           Dr. Kurt Weiss’ journey from patient to surgeon-scientist is not just a story of survival but one of triumph over adversity. His work embodies the spirit of resilience and innovation that drives Solving Kids’ Cancer.
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      &lt;br/&gt;&#xD;
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           At Solving Kids’ Cancer, we are committed to supporting innovative research and clinical trials — like the one that saved Dr. Weiss’s life — because we believe that every kid deserves to grow up. Through global, collaborative research and advocacy, we focus on finding treatments and cures for the most aggressive childhood cancers and providing resources to families battling pediatric cancers like osteosarcoma.
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           This Bone Cancer &amp;amp; Sarcoma Awareness Month, join us in spreading awareness, supporting research, and making a difference in the lives of children battling cancer. Your involvement can help accelerate the pace of discovery and bring us closer to finding cures.
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  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=pedbt_blog_240501&amp;amp;utm_campaign=gen&amp;amp;utm_source=pedbt_blog_240501&amp;amp;utm_medium=blog&amp;amp;utm_content=pedbt_blog_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Give-Today-button-300x75.png" alt="A pink button that says give today on it"/&gt;&#xD;
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           Sources:
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           1 Survivor, Surgeon, Scientist: One Doctor’s Cancer Journey – 
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    &lt;a href="https://inside.upmc.com/survivor-surgeon-scientist-one-doctors-cancer-journey%E2%80%AF/" target="_blank"&gt;&#xD;
      
           https://inside.upmc.com/survivor-surgeon-scientist-one-doctors-cancer-journey%E2%80%AF/
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    &lt;/a&gt;&#xD;
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           2 Kurt Weiss, MD – Osteosarcoma Patient Story – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://hillman.upmc.com/cancer-care/sarcoma/patient-stories/kurt-weiss" target="_blank"&gt;&#xD;
      
           https://hillman.upmc.com/cancer-care/sarcoma/patient-stories/kurt-weiss
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           3 Meet the Researcher – Kurt Weiss, MD: 
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    &lt;a href="https://www.curesarcoma.org/meet-the-researcher-kurt-weiss-md/" target="_blank"&gt;&#xD;
      
           https://www.curesarcoma.org/meet-the-researcher-kurt-weiss-md/
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      <pubDate>Thu, 01 Aug 2024 12:36:17 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/osteosarcoma-survivor-dr-kurt-weiss</guid>
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      <title>A Quick Guide to Your Role as a Parent Advocate</title>
      <link>https://www.solvingkidscancer.org/blog/parent-advocacy-resources</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           A Quick Guide to Your Role as a Parent Advocate
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      &lt;span&gt;&#xD;
        
            ﻿
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/parent+advocate+header.png" alt="Physician speaking with parents and child"/&gt;&#xD;
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           We know how overwhelming it can be to hear the words “Your child has cancer.”  Stepping into the role of a parent advocate is essential for your child’s well-being. It involves speaking on your child's behalf, making informed decisions, and ensuring they receive the best possible care. Here are critical steps you can take to advocate for your child:
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           Get to Know Your Pediatric Support Team
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           First, get to know your healthcare team. In most cases, a pediatric oncologist will manage the medical care of your child, but the members of your child’s healthcare team may also include nurses, social workers, and other specialists. Develop a good relationship with them. As a parent advocate, you are encouraged to ask them as many questions as needed about treatment plans and clinical trial options. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Here's an overview of key staff members likely to be part of your 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.chop.edu/your-healthcare-team" target="_blank"&gt;&#xD;
      
           child's
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;a href="https://www.chop.edu/your-healthcare-team" target="_blank"&gt;&#xD;
      
           healthcare
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    &lt;a href="https://www.chop.edu/your-healthcare-team" target="_blank"&gt;&#xD;
      
           team
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           , along with their roles and responsibilities.
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           Learn about care options
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    &lt;span&gt;&#xD;
      
           If your child is newly diagnosed, there are standard protocols at almost every children’s hospital in the U.S. These up-front treatments usually combine chemotherapy, surgery, and radiotherapy; sometimes as part of a phase III clinical trial.
          &#xD;
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Down the road, if the cancer is no longer responding to treatment or has returned, your child will be eligible to enroll in a phase I or phase II clinical trial. For more information, check out 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/understanding-clinical-trials"&gt;&#xD;
      
           this helpful childhood cancer resource about clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           Talk to a social worker
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           Each hospital has a social worker whose main role is to help patients and their families navigate the logistics of their child’s treatment and care. Social workers can also act as counselors to help you cope. They may be able to identify childhood cancer resources and connect you with cancer patient advocacy groups that assist with lodging, travel, financial support, or more. If you are unable to get in contact with your hospital’s social worker, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.cancercare.org/" target="_blank"&gt;&#xD;
      
           www.cancercare.org
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is a national organization with a staff of social workers who can offer free support in person or over the phone.
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           Keep your own records
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           Your child’s treatment may include visits to different hospitals and doctors. Keeping your own records can provide you and your healthcare team with vital information. If you collect printouts of daily reports, copies of scans, treatment protocols, and a daily diary of notes and observations, you can help ensure continuity of care for your child as a parent advocate.
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           Connect with other parents
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           When your child is diagnosed with cancer, you may feel isolated and alone. This is absolutely normal. Talking with other parents can broaden your pediatric cancer support network, offer hope and insight, and even connect you to 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/things-to-do-after-childhood-cancer-diagnosis/" target="_blank"&gt;&#xD;
      
           additional information and childhood cancer resources
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    &lt;span&gt;&#xD;
      
           . 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Countless pages on Facebook are dedicated to parenting support for childhood cancer. Search by pediatric cancer type in the search bar to see if any suitable options might help you connect with others.
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           Build a Pediatric Cancer Support Network
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Your friends and family members may be anxious to hear updates on how you and your child are doing. While caring for your child, you may find it challenging to call or email all of your friends and family. Consider creating a 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://caringbridge.com/" target="_blank"&gt;&#xD;
      
           Caring Bridge
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            page or 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.carepage.com/" target="_blank"&gt;&#xD;
      
           Carepage
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to keep people updated. You can change the privacy settings so that only people you know can view your child’s page. Creating a CaringBridge page or Carepage is easy, free, and allows loved ones to offer encouragement and support.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Talking to a social worker, connecting to other parents, or contacting nonprofit organizations can also help you build a strong pediatric cancer support network. Some organizations help provide more direct support to children with cancer, such as 
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    &lt;/span&gt;&#xD;
    &lt;a href="http://chemoangels.wixsite.com/chemo-angels-1" target="_blank"&gt;&#xD;
      
           Chemo Angels
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , which pairs a child with a pen pal. For siblings of children with cancer, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.supersibs.org/" target="_blank"&gt;&#xD;
      
           Supersibs
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            offers emotional support and information about camps to help children cope with the realities of cancer.
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Empowering Parent Advocates: Resources and Support
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    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we’re dedicated to empowering parent advocates like you with the necessary support to guide your child through the complex world of cancer treatment. Find updates on childhood cancer research, treatments, and care on 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/news-views"&gt;&#xD;
      
           our blog
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/this-week-in-pediatric-oncology"&gt;&#xD;
      
           podcast
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . You can also learn more about 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/symposium"&gt;&#xD;
      
           symposiums
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            that provide parenting support for childhood cancer.
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      <pubDate>Thu, 04 Jul 2024 11:58:52 GMT</pubDate>
      <author>kristi@solvingkidscancer.org (Kristi McKay)</author>
      <guid>https://www.solvingkidscancer.org/blog/parent-advocacy-resources</guid>
      <g-custom:tags type="string" />
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      <title>National Cancer Survivors Month</title>
      <link>https://www.solvingkidscancer.org/blog/jacobs-journey-a-childhood-cancer-survivors-story</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Jacob’s Journey: A Childhood Cancer Survivor’s Story
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every battle has its heroes, and among the bravest are young children like Jacob Mozer, who faced stage 4 high-risk neuroblastoma when he was barely old enough to walk. Diagnosed at only 16 months old, Jacob’s early years were filled with constant medical appointments and intense treatments. Despite these challenges, today, Jacob is a shining example of the remarkable progress in pediatric oncology. He’s not merely surviving; he’s thriving as a pharmacy resident, driven to give back to the medical community that gave him a second chance at life.
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           During National Cancer Survivors Month this June, we honor and celebrate fighters like Jacob who have battled cancer and emerged stronger. This month also serves to amplify the conversation about pediatric cancer survivorship and push for vital research that continues to save lives. Solving Kids’ Cancer (SKC) plays an essential role in this effort, supporting children like Jacob by funding crucial clinical trials that enhance survival rates and improve the quality of life for those fighting fatal childhood cancers.
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           Jacob’s Journey: Early Diagnosis and Treatment
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&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Jacob’s journey began with a sudden and alarming diagnosis of stage 4 high-risk neuroblastoma that plunged his family into uncertainty. “May 12, 1998, was the day my family’s life changed forever,” his father, Dr. Mark Mozer, recalled.1 The early symptoms were subtle and easily mistaken for common childhood issues — occasional vomiting and fussiness attributed to teething. Unfortunately, the truth was that it was a life-threatening tumor that demanded an immediate and aggressive treatment plan.
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  &lt;p&gt;&#xD;
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           The first year was an ordeal filled with chemotherapy, stem-cell transplants, major surgeries, and groundbreaking therapies like monoclonal antibody treatment. “The oncologist told us that we were in for a long, difficult year … It was Jacob’s only chance,” said Dr. Mozer. Each phase of treatment brought its own set of challenges and risks. Still, Jacob’s parents fought tirelessly to secure the best care possible, turning their home into a command center for medical research and advocacy. This time tested their determination and strengthened their commitment to their son’s survival and health. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Jacob-Mozer-Stage4Neurblastoma-216x300.png" alt="A young boy sitting on a couch reading a book"/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Importance of Family and Medical Support
          &#xD;
    &lt;/strong&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The support of Jacob’s family was instrumental in navigating his early years of treatment. With a father who is a pediatrician and a mother who is a pharmacist, Jacob had the advantage of caregivers who could navigate the complex medical landscape more effectively than most. Dr. Mozer described their home environment as a hub of constant learning and advocacy: “Our dining room turned into a study hall, piled high with folders and papers.” They engaged directly with research and treatments, advocating for Jacob every step of the way, which was crucial in managing the intensive and often overwhelming treatment regimen prescribed to him.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Inspired by his medical journey and the caring example set by his parents, Jacob decided to become a pharmacist. As a pharmacy resident, he focuses on each patient’s needs, drawing on his experiences as a childhood cancer survivor to provide thoughtful and understanding care. “My time as a patient gives me a special understanding of what they go through. I know the worries about medications and how they affect daily life. So, I take my role seriously, always considering what’s best for the patient,” shared Jacob.
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Role and Impact of Clinical Trials
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Clinical trials are crucial for developing new and more effective cancer treatments. Jacob’s involvement in a clinical trial at Sloan Kettering, where he received pioneering monoclonal antibody therapy, was a critical turning point in his cancer journey. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “I was fortunate to be part of one of the early clinical trial groups. It was available back then, and I responded well to the treatments,” said Jacob. Access to this advanced medicine was a lifeline for Jacob and offered hope to many other children with similar diagnoses. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer (SKC) is instrumental in this field by actively finding, funding, and advocating for clinical trials focused on the most challenging pediatric cancers. Their efforts are crucial in pushing forward promising treatments such as:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Lorlatinib
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : A targeted therapy drug that addresses specific genetic abnormalities in cancer, offering a more personalized treatment approach.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            International Consensus Protocol
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : This initiative aims to standardize treatment for ETMR (Embryonal Tumor with Multilayered Rosettes) cancer through international collaboration, enhancing the effectiveness and consistency of clinical trials across borders.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Minivan Trial
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : A study investigating the efficacy of combination therapies, which involves using multiple therapeutic approaches simultaneously to enhance treatment effectiveness.
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           Through these targeted trials, SKC not only boosts survival rates but also significantly impacts the quality of life for children battling cancer, demonstrating the power and necessity of specialized research in saving young lives.
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           Challenges of Pediatric Cancer Survivorship
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  &lt;p&gt;&#xD;
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           Surviving cancer is just the beginning of a lifelong journey filled with unique challenges. For Jacob, this transition included regular visits to the survivorship clinic — sessions he didn’t look forward to. “As a kid, you dread those visits because you hate blood draws, you hate needles, and the hospital was full of those,” Jacob recalled. Though uncomfortable, these check-ups are vital for managing the long-term effects of cancer treatment, showing the need for continued medical support even after beating cancer.
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           Jacob’s battle with cancer left him with some long-term challenges, including hearing loss and dental issues that required multiple surgeries and treatments. However, Jacob learned how to cope with these difficulties over time. He adapted by using closed captioning for watching TV, reading lips to enhance understanding during conversations, and choosing not to use hearing aids despite the difficulties posed by his partial hearing loss.
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           “I found ways to live with it,” Jacob said, reflecting on his decision to forego hearing aids during his more self-conscious teenage years and his efforts to maintain normalcy. Many survivors like Jacob learn to become resilient as they navigate the complexities of life after cancer. 
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           Late Effects of Childhood Cancer
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           As with Jacob, the long-term effects of childhood cancer treatments can deeply impact survivors throughout their lives. Research shows that over 95% of those who survive childhood cancer will face significant health challenges by the time they reach 45 years old.2 These findings show the importance of ongoing research to cure cancer and reduce the lasting side effects of treatments.
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           Common late effects from childhood cancer treatment3 can include:
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            Growth and Development:
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             Issues that can affect a survivor’s physical growth and overall development.
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            Organ Function:
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             Potential long-term damage to organs that may affect their function.
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            Reproductive Health:
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             Effects that might impact a survivor’s ability to have children and the health of those children.
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            Secondary Cancers:
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             The risk of developing other forms of cancer later in life.
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            Psychosocial Trauma:
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             Emotional and mental health challenges stemming from the cancer experience.
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           Understanding these challenges is crucial for providing survivors with the proper support and medical care as they age. Beating cancer is just one part of the journey. Ensuring a good quality of life post-treatment requires continued medical follow-up and support services to help manage these complex issues.
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           Encouragement and Advice for Survivors
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           Reflecting on his journey, Jacob offers a message of resilience and hope to other cancer childhood cancer survivors like him. “Learn to accept your situation and adjust your mindset accordingly,” he advised. “Don’t let your condition make you feel lesser.” 
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           Jacob also suggested practical ways to make everyday life easier, like using technology to help with physical challenges. For instance, he uses closed captioning on TV to help with his hearing difficulties and finds other minor adaptations to maintain a routine. These tips show how survivors can take control of their lives despite their conditions.
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           When asked why he chose his career in pharmacy, Jacob said, “I was always amazed by how medicine can make you feel better. It felt like magic to me.” This fascination led him to a career where he could help others, showing how personal challenges can lead to finding your passion.
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           Championing Change through Research Advocacy
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           Jacob stressed the importance of advocacy and giving back, which has been central to how his family copes and supports others. “We’ve been deeply involved in advocacy throughout my life,” Jacob said, sharing how their struggles inspire them to help others facing similar challenges. He highlighted a significant funding issue: Cancer is the number one cause of death by disease among children, but “only 4% of federal funding for cancer goes to childhood cancer.”4 Jacob believes funding needs to be more fairly allocated.
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            He also advocates for
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    &lt;a href="/orphan-drugs-their-impact-on-rare-childhood-cancers"&gt;&#xD;
      
           developing more drugs for rare childhood diseases
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           , which often don’t attract enough financial interest from pharmaceutical companies. “It’s tough to get new treatments developed for rare diseases because there isn’t enough profit for the companies,” he explained. This shortfall shows the need for changes in the healthcare system that put patients’ needs before profit. Jacob and his family are committed to creating a healthcare system that treats its youngest patients with compassion and fairness. “If we can prevent this for anybody else, we want to be part of that effort,” he added.
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           Building a Brighter Future for Childhood Cancer Survivors
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           As we mark National Cancer Survivor Month, we reflect on the inspiring journey of survivors like Jacob, whose battle with stage 4 neuroblastoma showcases the critical advancements in pediatric oncology. From enduring intense treatments to becoming a proactive advocate and pharmacy resident, Jacob’s story embodies the transformative impact of dedicated medical research and patient support.
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           Your contribution can drive this crucial work forward. By donating to Solving Kids’ Cancer, you’re supporting pivotal clinical trials and research that save lives and improve the quality of life for children battling cancer. Invest in a future where young survivors like Jacob can thrive and lead the way for others — 
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           because every kid deserves to grow up.
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&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=ncsm_blog_240601&amp;amp;utm_campaign=gen&amp;amp;utm_source=ncsm_blog_240601&amp;amp;utm_medium=blog&amp;amp;utm_content=ncsm_blog_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Give-Today-button-300x75.png" alt="A pink button that says give today on it"/&gt;&#xD;
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           Source:
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    &lt;span&gt;&#xD;
      
           1 Blue Springs Teen Wins Volunteer Award – 
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    &lt;a href="https://www.kmzu.com/news/local/blue-springs-teen-wins-volunteer-award/article_da74dc20-035e-5f8b-a90e-5bdf0c73904f.html" target="_blank"&gt;&#xD;
      
           https://www.kmzu.com/news/local/blue-springs-teen-wins-volunteer-award/article_da74dc20-035e-5f8b-a90e-5bdf0c73904f.html
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  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 Clinical Care for People Who Survive Childhood Cancer: A Review – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://jamanetwork.com/journals/jama/article-abstract/2809804" target="_blank"&gt;&#xD;
      
           https://jamanetwork.com/journals/jama/article-abstract/2809804
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 Late Effects of Treatment for Childhood Cancer (PDQ
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    &lt;strong&gt;&#xD;
      
           ®
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ) – Health Professional Version – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.cancer.gov/types/childhood-cancers/late-effects-hp-pdq" target="_blank"&gt;&#xD;
      
           https://www.cancer.gov/types/childhood-cancers/late-effects-hp-pdq
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    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Fri, 10 May 2024 12:41:07 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/jacobs-journey-a-childhood-cancer-survivors-story</guid>
      <g-custom:tags type="string" />
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    <item>
      <title>Trailblazing Treatments for Pediatric Brain Tumors</title>
      <link>https://www.solvingkidscancer.org/blog/trailblazing-treatments-for-pediatric-brain-tumors</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/blof-lab-3.png" alt="A close up of a person holding a test tube in a laboratory."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Trailblazing Treatments for Pediatric Brain Tumors
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Picture a fortress built to guard precious treasure but accidentally also keeps out the very allies it needs in a time of crisis. This is the challenge faced by medical researchers when dealing with the brain’s natural defense — the blood-brain barrier — especially in children with brain tumors. 
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    &lt;span&gt;&#xD;
      
           At Columbia University Medical Center, Dr. Luca Szalontay is leading the charge to breach this fortress with groundbreaking approaches. Recently, Dr. Timothy Cripe from Solving Kids’ Cancer’s podcast, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           This Week in Pediatric Oncology (TWIPO)
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           , interviewed Dr. Szalontay to delve deeper into these innovative treatments. This Brain Tumor Awareness Month, we’re shining a light on these important advances in treating children’s cancer.
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           Understanding the Challenge
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    &lt;span&gt;&#xD;
      
           Treating 
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    &lt;a href="/rare-brain-tumors-in-kids"&gt;&#xD;
      
           pediatric brain tumors
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            like diffuse midline glioma (DMG) is especially tough because of the brain’s own protective shield, known as the blood-brain barrier. This barrier keeps out most chemotherapy drugs as well as large molecules, like antibodies, making it hard to treat the tumors effectively. Dr. Szalontay describes the dilemma: “Our field hasn’t been able to advance as quickly as it has with leukemias or other solid tumors because the drugs don’t penetrate the brain efficiently.” 
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           She adds on the nature of this blood-brain barrier, “It’s evolutionary, very important to protect us from different toxins and harmful agents, but this is a shield which protects the tumor as well.” Even when drugs work well in lab tests, they struggle to get to the tumor in strong enough doses without harming the body.
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           Dr. Szalontay also points out that DMG tumors are found in very sensitive areas of the brain, making traditional surgery or radiation risky because they could damage vital brain functions. This makes finding safe and effective treatments for these tumors even more challenging.
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           So, what’s being done to tackle these obstacles and help kids fight these tumors?
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           Revolutionizing Brain Tumor Treatments
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           The Initiative for Drug Delivery Innovation (IDDI) at Columbia University, co-led by Dr. Szalontay and radiation oncologist Cheng-Chia Wu, MD, PhD, represents a dedicated effort to revolutionize pediatric brain tumor treatments.1 This interdisciplinary team, including key figures from Columbia’s biomedical engineering department such as Elisa Konofagou, PhD, and pediatric oncologists like Jovana Pavisic, MD, focuses on developing and applying cutting-edge drug delivery methods to improve outcomes for children with brain tumors.
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           The IDDI is pioneering the use of two particularly innovative brain tumor treatment methods: Convection Enhanced Delivery and Focused Ultrasound. These techniques are specifically designed to overcome the formidable challenges posed by the blood-brain barrier.
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            ﻿
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Luca-Szalonty-blog-300x300.png" alt="Luca szalontay md is a pediatric neuro-oncologist and assistant professor at columbia university irving medical center"/&gt;&#xD;
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  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Convection Enhanced Delivery: This method involves the direct delivery of therapeutic agents into the tumor via a catheter. Dr. Szalontay describes the process: “Using a baclofen pump, the drug is delivered continuously, ensuring it covers a larger area within the brain stem, similar to covering a globe.” This method has shown promise in clinical trials, where it improved the delivery of drugs to where they are most needed.
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      &lt;span&gt;&#xD;
        
            Focused Ultrasound: 
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      &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7823947/" target="_blank"&gt;&#xD;
        
            Focused ultrasound and micro-bubbles-mediated drug delivery for brain tumors
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            2 is a non-invasive technique that uses ultrasound waves to temporarily open the blood-brain barrier, allowing drugs to enter the brain. Dr. Szalontay notes, “Our focused ultrasound machine … is a bit different because it uses neuron navigation, allowing for precise drug delivery, enhancing the drug’s reach within the tumor.”
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           Impact and Next Steps to Personalized Therapies
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  &lt;p&gt;&#xD;
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           The promising results from these innovative treatments are sparking hope. Dr. Szalontay shares, “We were able to enroll 10 patients, and we can say the majority tolerated the treatment well.” This success not only proves these new methods work but also shows their potential for broader use in battling pediatric brain tumors.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Looking ahead, Dr. Szalontay is energized by the potential of personalized medicine, which could revolutionize how we treat these cancers. She’s diving deeper into research that customizes treatments to match the unique genetic blueprint of each brain cancer type, improving both the precision and effectiveness of therapies. They’re moving towards using 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/precision-medicine-advances-for-children-with-neuroblastoma/" target="_blank"&gt;&#xD;
      
           precision medicine techniques
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    &lt;span&gt;&#xD;
      
            to find the best drug combinations for each patient, based on the tumor’s specific traits. “I’m really hoping that it’s in the near future for us,” she says. This tailored approach promises to significantly improve treatment results, leading the way to more personalized and powerful therapies in pediatric oncology.
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           It Takes a Village
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  &lt;p&gt;&#xD;
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           Dr. Szalontay’s breakthroughs wouldn’t be possible without a strong team behind her. She often says, “These diseases and serving these patients — it really takes a village.” Her commitment to refining drug delivery systems not only enhances medical science but also lights a path of hope for many families facing these severe diagnoses.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As part of this village, Solving Kids’ Cancer (SKC) plays an instrumental role in pushing forward crucial research and treatment advancements. For over a decade, SKC has actively 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/pediatric-brain-tumors-and-our-impact/" target="_blank"&gt;&#xD;
      
           funded pre-clinical research and early-phase clinical trials for pediatric brain tumors
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           , broadening the spectrum of potential treatments available for these challenging conditions. By actively collaborating with pediatric cancer stakeholders across the globe, we help ensure that the latest, most effective therapies reach the children who need them most, turning cutting-edge research into real hope for families.
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  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Support the Fight Against Pediatric Brain Tumors
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  &lt;p&gt;&#xD;
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           As we observe Brain Tumor Awareness Month, the work of Dr. Szalontay and her team at Columbia’s IDDI highlights the vital progress being made in the battle against pediatric brain tumors. Their efforts are a testament to the potential breakthroughs that can significantly enhance survival rates and quality of life for affected children.
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Your support can keep this momentum going. When you donate to Solving Kids’ Cancer, you’re investing in a future where young patients not only beat the toughest cancers but also thrive with resilience and hope for tomorrow — 
          &#xD;
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    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
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&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=pedbt_blog_240501&amp;amp;utm_campaign=gen&amp;amp;utm_source=pedbt_blog_240501&amp;amp;utm_medium=blog&amp;amp;utm_content=pedbt_blog_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-300x75.png" alt="A pink button that says `` help solve kids ' cancer ''"/&gt;&#xD;
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           Source:
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           1 A New Paradigm for Pediatric Brain Tumors – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://www.pediatrics.columbia.edu/news/new-paradigm-pediatric-brain-tumors" target="_blank"&gt;&#xD;
      
           https://www.pediatrics.columbia.edu/news/new-paradigm-pediatric-brain-tumors
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           2 Focused Ultrasound and Microbubbles-Mediated Drug Delivery to Brain Tumors –
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7823947/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7823947/
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      <pubDate>Thu, 02 May 2024 12:46:35 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/trailblazing-treatments-for-pediatric-brain-tumors</guid>
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      <title>World Health Day: Pediatric Cancer’s Global Divide</title>
      <link>https://www.solvingkidscancer.org/blog/world-health-day</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           World Health Day: Pediatric Cancer’s Global Divide
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           Imagine this: Two children, born at the same moment, oceans apart. In a country brimming with medical resources, one child quickly gets top-notch treatment for cancer. Meanwhile, across the globe, the other child faces a drastically different reality, with limited access to basic care. This isn’t just a thought experiment — it’s the harsh truth of pediatric cancer treatment worldwide. 
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           Observed every year on April 7, World Health Day shines a light on the mission to make healthcare accessible for all. This day is particularly significant in the context of pediatric cancer, where vast disparities in treatment availability highlight the global challenge of ensuring every child has the opportunity for health and healing.
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           The Stark Contrast in Survival Rates: A Look at Pediatric Cancer Statistics
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           Every day, more than 1,000 children are diagnosed with cancer, and the chances of survival vary greatly depending on where they live.1 Pediatric cancer survival rates serve as a clear indicator of the disparities between high-income countries (HICs) and low- and middle-income countries (LMICs). In wealthier nations such as the United States and Western Europe, the 5-year survival rate for children with cancer is over 80%, thanks to advanced healthcare systems and access to the latest treatments.2
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           But, here’s a troubling childhood cancer statistic: in LMICs where 80% of children with cancer live, fewer than 20% survive.1 This gap is due to several factors, including late diagnoses or, tragically, no diagnosis at all. Many children succumb to the disease without access to pain medication, and the burdens of travel and the high costs force most families to abandon care. These challenges are compounded by limited access to necessary treatments,3 as well as a lack of specialized equipment and trained healthcare professionals needed for effective pediatric cancer treatment. Addressing this divide requires a concerted global effort to improve early detection, make treatments more affordable, and enhance healthcare infrastructures, giving every child a fair chance to beat cancer.
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           Navigating the Access Maze
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           Access to cancer care shouldn’t be a treasure hunt. Yet, for many in LMICs, it feels like that — a relentless search for something seemingly out of reach. Here’s the reality revealed in childhood cancer statistics worldwide: many areas lack enough doctors who specialize in children’s cancer4 and the prices of cancer drugs can be sky-high.2 Even getting to a hospital can be an ordeal, with some families traveling hundreds of miles. 
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           And the financial strain? Devastating. The cost of care can quickly add up to more than a year’s income, forcing households into deep financial distress. In many LMICs, the lack of comprehensive insurance coverage means families are often left to pay for pediatric cancer treatment entirely out-of-pocket.5 Families often face the impossible choice between their child’s health and their financial survival. 
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           Solving Kids’ Cancer: Bridging the Gap
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           Solving Kids’ Cancer (SKC) isn’t standing by; we’re on the front lines, actively working to make a difference in the global pediatric cancer landscape. Beyond funding research, advocating for policy changes, and fostering global partnerships, SKC is 
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    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           committed to educating
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            and empowering the community to take action. 
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           We understand that while we might not have a global foothold to address every aspect of the pediatric cancer divide directly, there’s power in collective action. Through our efforts, we aim to catalyze advancements in pediatric cancer treatments and care that could dramatically change outcomes for children worldwide.
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           • Research: We direct funds into cutting-edge studies, searching for 
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    &lt;a href="/solving-kids-cancer-firsts"&gt;&#xD;
      
           breakthrough treatments
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            that promise a brighter future for all kids, regardless of where they live.
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           • Advocacy: We advocate for children’s needs by steering research funding towards 
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    &lt;a href="https://solvingkidscancer.org/role-impact/#research-advocacy" target="_blank"&gt;&#xD;
      
           unmet challenges
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            and collaborating with experts to prioritize all children, including expanding trials to international sites to maximize access.2
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           • Global Partnerships: We don’t do it alone. By teaming up with researchers, hospitals, and other organizations across the globe, we’ve helped fund clinical trials that have extended to over 
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    &lt;a href="https://solvingkidscancer.org/skc-funded-projects/" target="_blank"&gt;&#xD;
      
           250 institutions across 15 countries worldwide
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           .
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           Uniting for a Cause
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           Solving Kids’ Cancer extends its mission beyond research by fostering community and collaboration. Our signature event, 
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    &lt;a href="https://solvingkidscancer.org/other-ways-to-support/" target="_blank"&gt;&#xD;
      
           Lace Up for Kids
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           , held annually during September Childhood Cancer Awareness Month, is a powerful testament to this mission, drawing communities together to stand in solidarity against childhood cancer. Additionally, supporters can 
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    &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc" target="_blank"&gt;&#xD;
      
           create their own fundraiser
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            and have a platform to engage their local communities, sparking crucial conversations and garnering support for the cause.
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           These initiatives highlight an important fact: While the challenge of pediatric cancer is significant, each of us has a part to play. By working together and supporting each other, we can fund the research needed to possibly change the direction of pediatric cancer treatment and care worldwide.
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           World Health Day: A Chance for Every Child
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           The fight against pediatric cancer is a stark reminder of the work ahead of us.6 It’s a battle that Solving Kids’ Cancer is dedicated to, but we need more than just our efforts — we need a global movement. This World Health Day, let’s rally for every child’s right to fight cancer on an even playing field. 
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           Donate today to help fund more innovative research and one day find a cure for childhood cancer — because every child, no matter where they are born, deserves a chance — a chance to fight, a chance to survive, and a chance to thrive.
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  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=whd_240401_blog&amp;amp;utm_campaign=gen&amp;amp;utm_source=whd_240401_blog&amp;amp;utm_medium=blog&amp;amp;utm_content=whd_blog_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-300x75.png" alt="A pink button that says `` help solve kids ' cancer ''"/&gt;&#xD;
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           Sources
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    &lt;span&gt;&#xD;
      
           1 WHO: Global Initiative for Childhood Cancer: An Overview – 
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    &lt;a href="https://www.who.int/docs/default-source/documents/health-topics/cancer/who-childhood-cancer-overview-booklet.pdf" target="_blank"&gt;&#xD;
      
           https://www.who.int/docs/default-source/documents/health-topics/cancer/who-childhood-cancer-overview-booklet.pdf
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    &lt;/a&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           2 Variations in global prices of chemotherapy for childhood cancer: a descriptive analysis – 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10209684/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10209684/
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    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           3 When Innovation and Commercialization Collide: A Patient Advocate View in Neuroblastoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://ascopubs.org/doi/10.1200/JCO.21.01916" target="_blank"&gt;&#xD;
      
           https://ascopubs.org/doi/10.1200/JCO.21.01916
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4 Pediatric Oncology in Developing Countries: Challenges and Solutions – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.jpeds.com/article/S0022-3476(13)00242-4/fulltext" target="_blank"&gt;&#xD;
      
           https://www.jpeds.com/article/S0022-3476(13)00242-4/fulltext
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Distribution of the workforce involved in cancer care: a systematic review of the literature- 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://www.sciencedirect.com/science/article/pii/S2059702921002544" target="_blank"&gt;&#xD;
      
           https://www.sciencedirect.com/science/article/pii/S2059702921002544
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    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           6 How I Live. 4 Families. 5 Countries. And the Global Fight to Cure Childhood Cancer- 
          &#xD;
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    &lt;a href="https://www.howilivewithcancer.com/" target="_blank"&gt;&#xD;
      
           https://www.howilivewithcancer.com/
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
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      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/kids-on-world-blog.png" length="310718" type="image/png" />
      <pubDate>Thu, 04 Apr 2024 12:48:22 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/world-health-day</guid>
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      <title>Resource: 7 Things to Do After Diagnosis</title>
      <link>https://www.solvingkidscancer.org/blog/things-to-do-after-childhood-cancer-diagnosis</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Childhood Cancer Resource: 7 Things to Do After Diagnosis
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  &lt;p&gt;&#xD;
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           Nothing can ever prepare a parent for the moment they learn their child has cancer. As reality sets in, so does the question: “What comes next?”
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           To help navigate this challenging time, Scott Kennedy, SKC Executive Director, and Donna Ludwinski, SKC Director of Research Advocacy offer some insights. Both have personal experience with the emotional and practical aspects of this journey, having faced their own children’s cancer battles. They’ve dedicated themselves to improving treatment options for the most difficult-to-treat cancers, drawing from their personal experiences and professional expertise.
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           Scott, motivated by his son Hazen’s fight, co-founded Solving Kids’ Cancer, while Donna, driven by her son Erik’s journey, has contributed to pediatric cancer research on a global scale. Their insights can serve as a valuable childhood cancer resource for families facing a diagnosis.
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           Here are 7 essential steps they recommend parents and caregivers consider:
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           1. Educate Yourself About the Disease
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           Facing a new and scary diagnosis can feel overwhelming, but gaining knowledge about your child’s cancer can be one of the most powerful tools in your arsenal. “Understanding your child’s cancer is the first step towards empowerment,” Scott advised, “Start by learning as much as you can about your child’s specific type of cancer. Utilize 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/" target="_blank"&gt;&#xD;
      
           reputable online resources
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and pediatric cancer resources to gather information. This knowledge will help you to make informed decisions and ask the right questions when discussing treatment options with your child’s medical team.” To give you a head start, here’s a list of 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://medlineplus.gov/ency/patientinstructions/000922.htm" target="_blank"&gt;&#xD;
      
           questions you can ask your child’s oncologist
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            about their specific cancer type.
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           2. Create a Community of Support
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           Drawing from her extensive experience advocating for parents and families, Donna emphasized the value of building a support network and strengthening family bonds: “It takes a village to navigate the challenges of childhood cancer. Seek out childhood cancer support groups for guidance and shared understanding; Reach out to friends and family who can offer a helping hand with daily tasks, such as meal preparation, household chores, and caring for other siblings, to conserve your energy for where it’s needed most.” 
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           Creating a community of support is not just about logistical help; it’s a 
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    &lt;a href="/lessons-before-and-after-childhood-cancer-from-a-mother"&gt;&#xD;
      
           source of emotional strength
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    &lt;span&gt;&#xD;
      
           . Donna also highlighted, “Make sure to keep open communication within the family to help acknowledge everyone’s feelings and fears.” Sharing this journey can bring a family closer in unexpected ways.
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           3. Keep a Record of Everything
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  &lt;p&gt;&#xD;
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           Keeping track of medical information might seem daunting, but it’s a crucial step in managing your child’s care. Scott suggested, “Start a binder or digital folder to store all the important documents and notes you take. This habit will not only keep you organized but also make you feel more prepared for appointments and discussions with your child’s healthcare team.”
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           4. Advocate for Your Child
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           “Never underestimate the power of a parent’s intuition,” Donna shared. “You know your child best, and in the medical world, your voice is critical.” She reminded that parents and guardians should fully understand the medical information presented and not shy away from asking questions or expressing concerns to their child’s doctors. Here is a glossary to help you understand 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.stanfordchildrens.org/en/topic/default?id=glossary---oncology-90-P02726" target="_blank"&gt;&#xD;
      
           medical terms related to oncology.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Adding to her advice, Donna highlighted, “Seeking second opinions is also part of 
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    &lt;/span&gt;&#xD;
    &lt;a href="/clinical-trials-what-to-expect-and-how-to-advocate-for-your-child"&gt;&#xD;
      
           advocating for your child
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . It’s about exploring all options and being confident in the treatment plan.” To help drive changes in treatments and care, she also encouraged parents and caregivers to get involved in pediatric cancer advocacy.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           5. Prioritize Self-Care
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           Scott, whose son Hazen bravely battled cancer, knows firsthand how mentally and emotionally taxing this journey can be for a parent. He stresses the benefits of self-care: “In the midst of caring for your child, don’t forget to take care of yourself too. It’s essential to carve out 
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    &lt;a href="/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like"&gt;&#xD;
      
           moments for self-care
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           , even if brief.” Whether enjoying a quiet cup of coffee in the morning or taking a short walk in the evening, finding small ways to recharge can significantly enhance your ability to stay strong and supportive of your child. 
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           6. Where to Go for Treatment
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           If the diagnosis is made by a pediatrician or general practitioner, a child is typically referred to the nearest Children’s Oncology Group (COG) hospital. The child’s oncologist will make a treatment recommendation based on a standard protocol, or recommend enrollment on a current frontline clinical trial. In most cases, the closest COG hospital will treat your child the same as any other hospital.
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      &lt;br/&gt;&#xD;
      
           Some very rare childhood cancers do not have standard protocols and are treated based on tumor board recommendations, and different approaches may be available at other large centers.
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           7. When to Request Additional Testing
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           While some pediatric cancers, like leukemia and lymphomas, have seen profound increases in survival rates with advanced treatments, there remain some tumor types that are difficult to treat. If you are facing a less favorable prognosis, talk to your oncologist about additional testing that may reveal targets that can be treated with new drugs or immunotherapies. Many rare tumor types are now being treated based on genetic mutations or antigen expression.
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           Finding Hope and Support in Research
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  &lt;p&gt;&#xD;
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      &lt;span&gt;&#xD;
        
            In the challenging journey following your child’s cancer diagnosis, know that there are organizations tirelessly working to improve outcomes for children facing this battle. At Solving Kids’ Cancer, we focus on driving research and developing safer, more effective treatments for the most challenging pediatric cancers. While our primary role is in research and childhood cancer advocacy, we understand the value of reliable information in these trying times. 
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  &lt;p&gt;&#xD;
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           We encourage you to explore our website for vital insights, childhood cancer resources, and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           updates on pediatric cancer research and treatments
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , which may provide some guidance and hope in your journey. Remember, you are not alone in this fight — together, we’re fighting for a future where every child has the chance to grow up.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/research-support-300x214.png" alt="A doctor is holding a paper cut out of a family"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.org/things-to-do-after-childhood-cancer-diagnosis/#mc_embed_signup" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Stay-Commected-Email-Button-300x75.png" alt="A pink button that says stay connected on it"/&gt;&#xD;
  &lt;/a&gt;&#xD;
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      <pubDate>Mon, 18 Mar 2024 12:54:02 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/things-to-do-after-childhood-cancer-diagnosis</guid>
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    <item>
      <title>Evelyn’s Brave Battle With ALK Neuroblastoma</title>
      <link>https://www.solvingkidscancer.org/blog/evelyns-neuroblastoma-journey</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Evelyn’s Brave Battle With ALK Neuroblastoma
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  &lt;p&gt;&#xD;
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           Every family’s story is filled with moments of joy and sudden challenges. In their Iowa home, Lindsay and Adam cherished the lively bustle of raising their young kids. But while they watched their nearly two year-old daughter Evelyn soak up a midwestern summer, they began to notice troubling changes in her behavior and health. This is the story of how one family faced neuroblastoma head-on and emerged stronger on the other side.
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           Early Signs and a Shattering Diagnosis
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           Evelyn was a typical toddler, bubbling with energy. But when she began to show unusual signs of irritability, clumsiness, and a persistent fever, Lindsay and Adam grew concerned. After multiple doctor visits and extensive testing, they received a heart-wrenching diagnosis: 
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    &lt;a href="/neuroblastoma-cancer-tumor-in-children"&gt;&#xD;
      
           neuroblastoma cancer
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           . Lindsay, a registered nurse, felt her entire family’s world shift. “It’s just a very surreal feeling. Your reality is shaken.”
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This initial diagnosis was just the beginning. Further genetic testing revealed an Anaplastic Lymphoma Kinase (ALK) ALK mutation in Evelyn’s cancer, a critical piece of information for determining her treatment. This mutation, causing specific genetic changes, can make cancer cells grow and spread. Knowing Evelyn had ALK neuroblastoma was crucial as it made her eligible for a targeted and potentially more effective treatment strategy offered in a specific arm of a clinical trial, providing a ray of hope in their fight against the disease. 
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evelyn-tray1-206x300.png" alt="A baby is sitting next to a yellow box with the name evelyn written on it"/&gt;&#xD;
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           The Start of Treatment and Move to Philadelphia
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           Determined to fight for Evelyn’s life, the family began the national frontline trial available in their home state. However, recognizing the benefit of expert care, especially given Evelyn’s ALK mutation, they sought out the Children’s Hospital of Philadelphia (CHOP) for its renowned pediatric oncology program. At CHOP, they consulted Dr. Yael Mossé, known for her significant work in 
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    &lt;a href="/landmark-transatlantic-trial-for-children-with-high-risk-neuroblastoma-funded-by-parent-led-charities"&gt;&#xD;
      
           ALK-related neuroblastoma
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           .
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           This transition to CHOP allowed Evelyn to continue in the Children’s Oncology Group (COG) clinical trial that included an ALK inhibitor along with the standard treatment of induction chemotherapy, surgery, two stem cell transplants, radiotherapy, and immunotherapy.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evelyn-sad1-225x300.png" alt="A baby wearing a blue shirt with a llama on it"/&gt;&#xD;
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           The Harsh Reality of Crizotinib and Transition to Lorlatinib
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           Initially, Evelyn was given 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3876666/" target="_blank"&gt;&#xD;
      
           crizotinib
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           , a drug that is minimally effective at fighting neuroblastoma cancer and causes severe 
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    &lt;a href="/fertility-issues-for-childhood-cancer-survivors"&gt;&#xD;
      
           side effects
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           . “Every time she took it, it was pretty debilitating,” Lindsay shared. The medicine tasted so bad and caused such severe vomiting that Evelyn needed a nasogastric (NG) tube for nourishment, making each day a struggle. 
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           In February 2022, Evelyn faced another major challenge: her second autologous transplant. Unfortunately, it led to serious complications that necessitated a prolonged pediatric intensive care unit (PICU) stay and nine months of total parenteral nutrition (TPN) at home, a period that tested the family’s strength and resilience.
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           Due to a timely amendment to the trial spurred by funding from Solving Kids’ Cancer, Evelyn was the first child on the trial to 
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    &lt;a href="/targeted-therapy-for-children-with-alk-driven-neuroblastoma"&gt;&#xD;
      
           receive lorlatinib
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            in May 2022. This drug, a third-generation ALK inhibitor, was a game-changer. It was designed to more effectively target Evelyn’s neuroblastoma and is more tolerable than crizotinib.
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           Lindsay and Adam observed profound changes. Evelyn’s severe side effects from previous treatments diminished, and she began to regain some of her spirited energy. “One of Lorlatinib’s better side effects is that it increases appetite,” Lindsay remarked, a major milestone that gave her and her family a renewed sense of hope.
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            ﻿
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           Immunotherapy and Acute Respiratory Distress: Navigating New Challenges
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           Two months after beginning her lorlatinib treatment, Evelyn moved on to the immunotherapy phase of her treatment. This included adding three agents — dinutuximab, GM-CSF, and isotretinoin — along with the lorlatinib.
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           Dinutuximab is an antibody that binds to the neuroblastoma cell surface antigen, GM-CSF helps boost white blood cell production to strengthen the immune system, and isotretinoin causes cancer cells to mature or differentiate. Each of these drugs plays a distinct and complementary role, designed to rid microscopic disease remaining after the initial phases of treatment consisting of chemotherapy, surgery, stem cell transplants, and radiotherapy.
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  &lt;p&gt;&#xD;
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           While the first cycle of this combination treatment was manageable for Evelyn, the second cycle proved to be too much for her body to handle. It led to a severe condition called acute respiratory distress syndrome, a life-threatening lung issue that required specialized support from a machine called veno-venous ECMO to help her breathe and survive.
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           Lindsay reflected on this challenging period, “We were getting closer to the end of treatment, so I had all the best hopes for it, but something happened … it just went too far.” Despite the best efforts of the medical team, this stage of Evelyn’s treatment highlighted the delicate balance between treating the disease and protecting the fragile health of a young child. “These treatments are just hard on kids. But I’m grateful that she can take lorlatinib,” Lindsay shared.
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  &lt;/p&gt;&#xD;
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evelyn-lightbulb2-224x300.png" alt="A little girl in a hospital bed holding a light bulb"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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           The Vital Role of Solving Kids’ Cancer
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer (SKC) was instrumental in bringing lorlatinib to children like Evelyn. With funding and advocacy, SKC sped up the process, getting this life-changing medication from initial trials for relapsed or refractory patients to children like Evelyn in firstline treatment.
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           Lindsay shared, “I’m excited that there is an organization out there that’s willing to take a risk on ALK neuroblastoma.” SKC’s work not only impacted Evelyn’s life directly but also offers hope for future 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/solving-kids-cancer-firsts"&gt;&#xD;
      
           advancements in treating childhood cancer
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    &lt;span&gt;&#xD;
      
           .
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  &lt;/p&gt;&#xD;
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Jackson-Family-USE1-768x497.png" alt="A family is posing for a picture while sitting on a couch."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=evelyn_lorlatinib_blog&amp;amp;utm_campaign=gen&amp;amp;utm_source=evelyn_lorlatinib_blog&amp;amp;utm_medium=blog&amp;amp;utm_content=lorlatinib_blog2_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER-300x75.png" alt="A pink button that says `` help solve kids ' cancer ''"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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           A Heartfelt Message of Hope and Advocacy
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      &lt;span&gt;&#xD;
        
            ﻿
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           Through their journey, Evelyn’s parents have become strong advocates for research, precision medicine, and community support. They encourage other parents to seek out the best treatments, ask questions, and become proactive in their child’s health journey. “I would tell a newly diagnosed parent to get their tumor tested for mutations first thing,” Lindsay advised, emphasizing the importance of armed knowledge and expert care.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Evelyn’s story, though filled with its fair share of challenges, is ultimately a story of courage and resilience. As Evelyn continues to grow and thrive, she symbolizes the potential for brighter futures, made possible by the relentless pursuit of better treatments for better outcomes. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When you support Solving Kids’ Cancer, you help fuel research, and nurture hope for countless children and their families fighting their toughest battle — 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
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  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evelyn-tray1-206x300.png" length="152496" type="image/png" />
      <pubDate>Thu, 25 Jan 2024 13:00:31 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/evelyns-neuroblastoma-journey</guid>
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      <title>Arden’s Story of Hope</title>
      <link>https://www.solvingkidscancer.org/blog/ardens-story-of-hope</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           From Neuroblastoma Cancer to No Evidence of Disease: Arden’s Story of Hope
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When a young child starts daycare, catching a bug or two is quite normal. But for 15-month-old Arden, a week of persistent low-grade fevers and stomach troubles soon became a concern for her parents, Megan and David. These symptoms, which initially seemed like common childhood issues to the nurse practitioner at Arden’s primary care doctor’s office, didn’t fade away and began to impact Arden’s energy and playfulness.
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           Megan and David’s concern turned to alarm when it became clear these were not just passing ailments; they were signs of something more serious. This realization drove them to seek additional medical attention, marking the start of a difficult and unforeseen path. It was a journey fraught with worry and uncertainty, yet they remained steadfast in their relentless pursuit of hope.
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           The Path to Diagnosis
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    &lt;span&gt;&#xD;
      
           The weekend before Arden’s diagnosis was particularly distressing. She had a severe stomach bug that seemed like a typical virus at first, especially when her parents got sick too. But as the new week began, her condition got worse. Megan remembered the troubling signs: “She was really sleepy, she just wasn’t herself.” A visit to a new pediatrician led to a concerning discovery when he felt a mass on Arden’s left adrenal gland, a small organ above the kidney that produces hormones. 
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  &lt;p&gt;&#xD;
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           This alarming find quickly shifted their course to the Children’s Hospital of Philadelphia (CHOP), renowned for its pioneering work in pediatric cancer treatment. At CHOP’s oncology floor, Arden underwent further evaluation, including an MRI that offered a more detailed view of her condition.
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           On November 18, 2019, the reality hit hard as Arden’s family faced the diagnosis of 
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           neuroblastoma cancer
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    &lt;span&gt;&#xD;
      
           . From diagnosis, Arden’s primary oncologist was Dr. Frank Balis, and then Dr. Grossmann and Dr. Mossé took the lead to support Arden through her treatment as part of the Children’s Oncology Group (COG) clinical trial. This transfer to CHOP was not just a change in location; it was a step into a world of specialized care and hope for effective treatment.
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           The Realities of Cancer Treatment
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Megan and David had tremendous anxiety during these initial days of diagnosis and staging, followed by a whirlwind of hospital stays, rigorous testing, and the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           harsh realities of cancer treatment
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Knowing treatment was needed right away, the family agreed to start Arden on intermediate-risk instead of high-risk chemotherapy in order to leave open the possibility of participating in the Children’s Oncology Group (COG) 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/clinical-trials-what-to-expect-and-how-to-advocate-for-your-child/" target="_blank"&gt;&#xD;
      
           clinical trial
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , while her biopsied tumor was sent off for further research to determine if she had the ALK gene alteration. This means there’s a problem with the ALK gene, causing the cancer to grow quickly and is particularly hard to treat. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Tests later revealed that Arden did have 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/titan/" target="_blank"&gt;&#xD;
      
           ALK neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            — a critical discovery that helped steer her treatment toward more targeted therapies and qualifying her for the COG trial with new and more effective treatment for her type of neuroblastoma cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Challenge with Crizotinib
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In December 2019, Arden began taking 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3876666/" target="_blank"&gt;&#xD;
      
           Crizotinib, a targeted cancer drug
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            designed to specifically attack ALK+ neuroblastoma cancer cells as part of her neuroblastoma treatment protocol under the COG trial. Arden had major success with the medication, a promising development in her battle against cancer. Megan, when recalling the doctors’ assurance, shared, “They told us, ‘If it works, you’re going to see the tumors just start to melt away.” And indeed, the treatment did just that.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But, while Crizotinib was effective in fighting Arden’s disease, it came with significant side effects. She experienced a substantial decrease in her appetite. Megan recounted, “She initially had a nasogastric (NG) tube and then a gastrostomy (G)-tube … her entire nutrition was by feed.” 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Crizotinib caused many side effects that seriously impacted her quality of life. The medication also led to gastrointestinal issues and nausea, complicating her recovery. This phase was demanding, with late-night medication routines and constant care. Despite these difficulties, Megan and David remained hopeful, committed to the treatment, and eagerly looking forward to the day when Arden would return to being her cheerful, energetic self.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Miracle: No Evidence of Disease
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In April 2020, after finishing her chemotherapy and surgery to remove her tumor, Arden had her first scans after diagnosis. Her family anxiously awaited the news that would shape their future. At 9 pm, Dr. Grossmann called with life-changing words: “Megan, you got your miracle. There’s no more evidence of disease.” Arden had reached 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.healthline.com/health/cancer/ned-cancer" target="_blank"&gt;&#xD;
      
           No Evidence of Disease (NED)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            after her tough fight against ALK neuroblastoma, marking a critical milestone that flooded the family with relief and joy.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This profound moment of hope and gratitude came after many months of treatment, reflecting their relentless pursuit of a cure. Megan remembers all the ups and downs, the worry, and the fear, but they always focused on one thing: getting Arden completely well. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “From day one, we didn’t want to know the statistics of her survival, we just wanted to cure her and wanted everyone on her team to focus on that goal,” she recalled. This success wasn’t just for Arden alone; it was the result of everyone — family, doctors, nurses, researchers, and organizations — working to turn hope into reality.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Transformative Phase with Lorlatinib
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Two years later, after reaching NED, Arden started a 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/targeted-therapy-for-children-with-alk-driven-neuroblastoma/" target="_blank"&gt;&#xD;
      
           new kind of neuroblastoma treatment called Lorlatinib
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . This medicine was made just for her type of neuroblastoma cancer, and it worked in a different way than her old medicine, Crizotinib. Lorlatinib was better at targeting cancer cells and had fewer side effects, which was good news because Crizotinib had been hard on Arden.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Switching to Lorlatinib was done to help prevent Arden’s cancer from coming back. Even though she had achieved NED, there was still a chance the cancer could return. Lorlatinib helped lower this risk, offering continued treatment while improving her quality of life.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Arden’s response to Lorlatinib was extraordinary. Her blood tests improved dramatically, her immune system started to strengthen, and she regained her appetite. “She became just voraciously hungry,” Megan recalled, “which after years of not seeing your kid eat, we were like, ‘Eat everything.’”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lorlatinib did more than just keep the cancer away. It helped bring back the fun and playful side of Arden’s life. She was lively and energetic again, enjoying being a kid. This was a huge relief and joy for her family – Lorlatinib didn’t just help with the cancer; it helped Arden be a happy, normal kid again.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Solving Kids’ Cancer’s Role
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer (SKC) is dedicated to finding, funding, and advocating for groundbreaking treatments specifically for children facing the deadliest cancers. Recognizing the potential of Lorlatinib as a promising treatment, SKC actively pushed for its research and streamlined its approval into clinical trials, cutting down the typically lengthy process from over a decade to just four years.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Megan expressed gratitude to SKC, “Their support went beyond funding. They gave us hope and the chance for a better, less harmful treatment.” SKC’s dedication to driving research and clinical trials addresses the crucial need for treatments that not only cure but also reduce 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           long-term side effects
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and improve the quality of life for young survivors. Our efforts are paving the way for a future where children can overcome cancer and thrive.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Arden-2a-221x300.png" alt="A little girl is holding a sign that says first day of preschool"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Hope for More Families
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Today, Arden is growing into a happy, active girl, enjoying soccer and ballet, which fills Megan with joy. “Seeing her so full of life is more than we ever dreamed,” she said with a smile. Yet the impact of Arden’s recovery extends beyond their family; they want to share their hope with others too. “If our experience could ease another family’s journey, that would mean so much,” Megan shared. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When you support Solving Kids’ Cancer, you’re not just donating to a cause; you’re investing in hope and a healthier future for all children battling cancer. It’s a commitment to finding the gentlest and most effective treatments, ensuring that each child, like Arden, has the chance to enjoy childhood to the fullest — because every kid deserves to grow up.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=arden_lorlatinib_blog&amp;amp;utm_campaign=gen&amp;amp;utm_source=arden_lorlatinib_blog&amp;amp;utm_medium=blog&amp;amp;utm_content=lorlatinib_blog1_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/GIVE-768x81-15696893.png" alt="A pink circle with the words `` give today '' written on it."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Arden-4a-269x300.png" length="236730" type="image/png" />
      <pubDate>Thu, 18 Jan 2024 13:07:16 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/ardens-story-of-hope</guid>
      <g-custom:tags type="string" />
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        <media:description>thumbnail</media:description>
      </media:content>
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    </item>
    <item>
      <title>Solving Kids’ Cancer Firsts</title>
      <link>https://www.solvingkidscancer.org/blog/solving-kids-cancer-firsts</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer Firsts: A Decade of Breakthroughs &amp;amp; Leadership
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer is not just our name — it’s our mission. We target the toughest childhood cancers with the lowest survival rates because every kid deserves to grow up. Through global collaboration, we drive new treatments forward like combinations, sequences, and targeted cancer immunotherapy approaches. Our commitment is to wisely invest in innovative projects, making hope tangible and cures a reality for children and families everywhere. Here is a comprehensive overview of the impact we’ve made over the last decade — and it’s all thanks to you.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Timeline of Innovation
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For over ten years, Solving Kids’ Cancer has been at the forefront of cancer research and advocacy, marking each year with significant milestones that have shaped the landscape of pediatric oncology.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/SKC-Timeline-optimized-v1.1-1536x1253.png" alt="A timeline showing the years from 2008 to 2023"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Making a Global Impact
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Globally recognized. Locally impactful. Our presence resonates, ensuring the fight against childhood cancer never slows down.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/patient-300x300.png" alt="A purple icon of a person with a heartbeat line."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Patient Expertise:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            By integrating patient experiences and viewpoints, as well as knowledge of the cancer research landscape, we review and ensure that clinical trials are not only scientifically rigorous but also meet the real needs of children affected by cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Advocate, Pediatric and Adolescent Solid Tumor Steering Committee, National Cancer Institute (NCI), (2023-present)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-pills-209066-512D6D-150x150.png" alt="A purple icon of two pills on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Collaboration in Drug Development:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            This collaborative effort with expert stakeholders including advocacy, industry, academia, and regulatory agencies focusing on speeding up the testing and approvals of novel drugs for patients with pediatric cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Member, Pediatric Drug Development (Fit for Filing), Accelerate Working Group 2, (2015-present)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/mag-glass-150x150.png" alt="A purple magnifying glass icon on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Quality Oversight:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Our crucial advocacy informs Health Technology agencies such as the UK’s National Institute for Health and Care Excellence (NICE), influencing national drug approvals.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • National Institute for Health and Care Excellence (NICE), Drug Appraisals, (2015-present)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-globe-6281506-512D6D-150x150.png" alt="A purple icon of a person holding a globe."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • International Coalitions: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Working with like-minded charities in several countries we build collaborations to initiate and fund transatlantic cancer clinical trials, to ensure that better therapies are accessible to more children.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Founding Board Member, Coalition Against Childhood Cancer (2012-present)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/microscope-150x150.png" alt="A purple microscope icon on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Reviewing Pediatric Research:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Serving on the NCI’s Central Review Board, we ensure that cancer clinical trials are conducted according to ethical regulations and that the risk/benefit ratio of therapies are appropriate for children battling cancer.
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Member, National Cancer Institute (NCI), Pediatric Central Review Board, (2015-present)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-shield-6280343-512D6D-150x150.png" alt="A purple shield with a check mark inside of it."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Advocacy in Cancer Immunotherapy:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Our involvement enables us to play a vital role in enhancing the effectiveness and accessibility of immunotherapies for patients worldwide, reflecting our dedication to pioneering transformative cancer treatments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Member, Society for Immunotherapy of Cancer (SITC), (2013-present)
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/approved-150x150.png" alt="A purple icon of a hand holding a stamp on a piece of paper."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Advocacy at the FDA:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            We influence policy and decision-making processes, ensuring that patient needs and experiences are at the forefront of FDA approvals and breakthroughs in cancer treatment.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           FDA Patient Representative and FDA Oncologic Drugs Advisory Committee, (2010-present)
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Empowering the Community With Knowledge
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Our research lights the path forward, igniting hope and discovery in the pursuit of cures for cancer. Each publication we author contributes to a growing foundation of knowledge, helping to guide the global medical community toward groundbreaking, life-saving treatments:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            2022 first paper on guidance for fit for filing data in academic sponsored cancer clinical trials:
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             “The Critical Role of Academic Clinical Trials in Pediatric Cancer Drug Approvals: Design, Conduct, and Fit for Purpose Data for Positive Regulatory Decisions” 
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://ascopubs.org/doi/full/10.1200/JCO.22.00033" target="_blank"&gt;&#xD;
        
            Read more
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
             
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            2022 first advocate-bioethics authored paper on ethical issues:
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             “A Systematic Literature Review to Identify Ethical, Legal, and Social Responsibilities of Nonprofit Organizations When Funding Clinical Trials in Pediatric Cancer” 
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://pubmed.ncbi.nlm.nih.gov/35713116/" target="_blank"&gt;&#xD;
        
            Read more
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            2022 first advocate-authored paper on parent perspectives on the use of stem cell transplant for high-risk neuroblastoma:
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             “To Transplant, or Not to Transplant? That is the Question. A Patient Advocate Evaluation of Autologous Stem Cell Transplant in Neuroblastoma” 
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://pubmed.ncbi.nlm.nih.gov/35373890/" target="_blank"&gt;&#xD;
        
            Read more
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            2021 first advocate-authored white paper published in leading Oncology Journal:
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             “When Innovation and Commercialization Collide: A Patient Advocate View in Neuroblastoma” Journal of Clinical Oncology. 
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://ascopubs.org/doi/10.1200/JCO.21.01916" target="_blank"&gt;&#xD;
        
            Read more
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ﻿
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Leading and Collaborating for a Cure
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer has pioneered projects pushing the boundaries of what’s possible. Our funding and leadership have facilitated major cancer research and treatment advancements such as:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            ETMR Breakthrough Cancer Treatment
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Starting the very first treatment plan for a very rare kind of childhood cancer.
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            International Drug Cancer Clinical Trials
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Partnering with a large team to test new medicines in the toughest neuroblastoma cases.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            New CAR T-cell Treatment
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Creating a new type of therapy using the body’s own cells to fight specific brain cancers in kids.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Studying Cancer Genes
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Reviewing the genes of pediatric cancer to help doctors pick the best treatment for each child with neuroblastoma that comes back or doesn’t get better with standard treatment.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Sharing Knowledge Worldwide
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Building a global network that lets doctors and researchers around the world share what they know about neuroblastoma to help kids faster and more effectively.
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Fighting for Medicine for All
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Advocating to make sure children everywhere can get the latest cancer-fighting medicines.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every project advances us towards a cure for cancer, so children can look forward to living full, healthy lives.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Pioneering a United Front for Global Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           By uniting global experts, we steer the direction of cancer research, advocating for a better future for every child. Solving Kids’ Cancer has continued to earn a seat at the table among childhood cancer research experts, contributing to the direction of therapeutic development worldwide:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Global Research Initiatives
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Involvement in major research efforts that span countries and continents, looking to uncover the next big breakthrough in cancer treatment.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Expert Conferences and Panels
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Speaking at and participating in international conferences, sharing insights and learning from others in the field.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Advocacy for Research Funding
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Pushing for more investment in childhood cancer research, ensuring that these critical studies receive the support they need.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Partnerships with Research Institutions
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Partnering with top cancer research centers to accelerate the development of new therapies and get them to children.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Policy Influence
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            : Working with policymakers to make sure that the needs and challenges of pediatric cancer research are understood and addressed at the highest levels.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Together, these efforts are creating a strong network that is advancing the cause of childhood cancer treatment and research.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Here’s to Another Decade of Progress
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Research into pediatric cancer requires time, financial resources, public interest, and unwavering dedication. Over the last decade, we’ve gained tremendous momentum, but there’s still much more to accomplish. That’s why 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=skc_firsts_lp&amp;amp;utm_campaign=gen&amp;amp;utm_source=skc_firsts_lp&amp;amp;utm_medium=blog&amp;amp;utm_content=skc_firsts_lp_cta" target="_blank"&gt;&#xD;
      
           your support is crucial
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            — it fuels our ongoing progress, transforming lives, giving hope, and bringing us closer to a future where every child has the chance to grow up.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=skc_firsts_lp&amp;amp;utm_campaign=gen&amp;amp;utm_source=skc_firsts_lp&amp;amp;utm_medium=blog&amp;amp;utm_content=skc_firsts_lp_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/button-768x256.png" alt="A purple button that says `` give today '' on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Feature-Image-SKC-firsts.png" length="275168" type="image/png" />
      <pubDate>Sat, 25 Nov 2023 12:11:18 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/solving-kids-cancer-firsts</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Feature-Image-SKC-firsts.png">
        <media:description>thumbnail</media:description>
      </media:content>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Feature-Image-SKC-firsts.png">
        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>Ways to Give Back During the Holidays</title>
      <link>https://www.solvingkidscancer.org/blog/ways-to-give-back-during-the-holidays</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/gold-ribbon-1024x206.png" alt="A gold ribbon with a bow on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Holiday Fundraiser Ideas to Support Kids with Cancer
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For most, the holidays mean joy, togetherness, and warm memories by the fire. But for families facing pediatric cancer, this season can feel anything but magical.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           A cancer diagnosis doesn’t pause for the holidays. Families balance treatment plans, hospital visits, and everyday life while holiday traditions take a backseat.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, every child deserves a future filled with joy, laughter, and holiday cheer. That’s why we’re laser-focused on finding breakthroughs and cures for the most aggressive childhood cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           This season, YOU can help bring the magic of hope back to these families. Whether planning a holiday fundraiser or looking for fundraising ideas for charities, every action—big or small—makes an impact. Here’s how you can be part of the mission:
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Power of Our Cancer Community: How You’re Making a Difference
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every year, your generosity fuels stories of hope, healing, and resilience. Here are a few powerful examples of how your childhood cancer donation is impacting lives:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           1. Be a Voice of Hope
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Your voice matters. Shouting it from the rooftops is optional, but sharing is essential! By joining our online community, you’re helping amplify the urgency of our mission. Share posts, spread awareness, and invite others to join the fight. Every share can lead to another heart moved to action.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Post this on your feed:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           Every child deserves a chance to grow up! I’m giving back this holiday season by supporting @SolvingKidsCancer, a non-profit organization dedicated to life-saving research for pediatric cancer. Together, we can bring hope to kids facing cancer. → 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://solvingkidscancer.org/" target="_blank"&gt;&#xD;
      
           solvingkidscancer.org
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Did You Know?
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sharing a post on social media can reach over 300 people on average — that’s 300 potential supporters who might not have known about the urgent need for pediatric cancer research!
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           2. Start a Fundraiser in 5 Minutes
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Got a fun idea? A knack for baking? A flair for running or hosting events? Great — because every creative spark can fuel hope! 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/other-ways-to-support/" target="_blank"&gt;&#xD;
      
           Starting a fundraiser
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is so simple with our platform. In just a few clicks, you can raise funds to support life-saving research for kids who need it most.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Perna-Family-240x300.png" alt="A family posing for a picture in front of a fence with trees in the background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Inspire Others
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/easy-fundraising-ideas-for-childhood-cancer-awareness/" target="_blank"&gt;&#xD;
      
           Brandon Perna
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , creator of That’s Good Sports, turned his passion for sports into hope for kids battling cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “I love raising money for SKC because I know every dollar makes a huge impact towards helping one of the worst scenarios any parent can imagine. Once they connected their charity through YouTube, it became incredibly easy for me to create a fundraiser on my channel, and I plan on doing more throughout the year… I can’t think of many things more important than the work they’re doing.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Tip: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Make your holiday fundraiser personal. Tell your audience why you care — it could inspire them to join you!
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           3. Double or Triple Your Donation
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Did you know your employer might be Santa in disguise? Many companies match employee donations, turning your $50 into $100 — or more! It’s one of the easiest ways to maximize your impact, and it only takes a few minutes to check with your HR department.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Why It Matters
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Matching programs help stretch resources further, ensuring that more research is funded and more children have access to potentially life-saving treatments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           4. Make Your Birthday a Celebration of Hope
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Start next year off right — by giving back! Instead of birthday presents, ask your friends and family to donate to Solving Kids’ Cancer. Their generosity will help fund cutting-edge treatments for kids battling cancer. One meaningful day can make an entire year brighter for these families.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Did You Know?
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hosting a birthday fundraiser on platforms like Facebook or Instagram is one of the fastest ways to rally support. It’s also a great way to find fundraising ideas for charity that resonate with your network.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           5. Get Creative with Crafting for a Cause
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Calling all creators! Whether it’s handmade ornaments, holiday cards, or knitted scarves, you can turn your talent into life-saving support. Plus, crafting together is a great way to involve the kids and teach them about giving back.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Audrey’s Angels
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Audrey-and-angels-300x290.png" alt="A group of girls are posing for a picture in front of a table"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Audrey was diagnosed with high-risk neuroblastoma when she was just 5 years old. At 11, she began creating 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fundraising-ideas-and-inspiration/" target="_blank"&gt;&#xD;
      
           beautiful angel ornaments out of soda cans to raise money for childhood cance
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           r nonprofits like Solving Kids’ Cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “Making the angels is an amazing way for me to give back to the community even as a student. I want to support those who have been in the same situation as I have and hope for a better future for children with cancer.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Creative Idea:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Turn your crafting session into a holiday fundraiser! Invite friends to join and donate the proceeds to Solving Kids’ Cancer. Fun + fundraising = double the joy!
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           6. Give a Gift in Memory of a Child
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Looking for a meaningful gift this holiday season? Give in memory of a child who has lost their battle or in honor of a child still fighting. Your gift will fund research for safer, more effective treatments and bring hope to families facing the unimaginable.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Mother’s Tribute
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Lara-Hans-300x236.png" alt="A woman is holding a child with cancer in her arms"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lara W. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/lessons-before-and-after-childhood-cancer/" target="_blank"&gt;&#xD;
      
           honors her son Hans
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , forever 8, by giving back.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            “We’ve been through clinical trials ourselves, and we know how vital they are. Giving back helps ensure other families have the same opportunity like us. Charities like Solving Kids’ Cancer fill critical funding gaps that no one else does.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Special Touch:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Send a holiday card letting someone know you’ve donated in their honor—it’s a heartfelt way to celebrate the season.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Make Hope a Holiday Tradition
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Whether you’re hosting a holiday fundraiser, sharing on social media, or making a gift in memory of a loved one, your actions this holiday season bring us closer to cures. Together, we can create a world where children grow up healthy, happy, and cancer-free.
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Thank you for joining us in this mission of hope. Let’s make this season truly magical.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Tue, 21 Nov 2023 21:36:36 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/blog/ways-to-give-back-during-the-holidays</guid>
      <g-custom:tags type="string">News &amp; Views</g-custom:tags>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2024-holiday-blog-image-300x150-cde61d19.png">
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    <item>
      <title>SKC Holiday 2023</title>
      <link>https://www.solvingkidscancer.org/blog/skc-holiday-2023</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2023-ways-to-give-blog-banner-2048x512.png" alt="A person is holding a gift box with a bow in their hands."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2023: Ways to Give Back During the Holidays
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For many, the holiday season symbolizes joy, togetherness, and reflection. However, for families confronting the harsh reality of pediatric cancers, the season can be exceptionally challenging.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Navigating a cancer diagnosis replaces joyful traditions. Families are thrust into seeking the best treatment options, often while managing everyday life.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we believe every kid deserves a future filled with holidays and family memories. That’s why we’re dedicated to accelerating groundbreaking treatments and cures for aggressive childhood cancers with low survival rates.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Your contributions have been vital in these accomplishments, and every gift furthers our ability to provide life-saving treatments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/pink-child-with-gift-226x300.png" alt="A child is holding a gift box with a pink bow."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=blog_holiday_2023&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_holiday_2023&amp;amp;utm_medium=blog&amp;amp;utm_content=blog_holiday_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/support-now-button-300x75.png" alt="A pink button that says support now on it"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As we begin the season of holiday giving, we ask that you consider giving hope to children with cancer and their families by supporting pediatric cancer research. Here are a few ways to give back during the holidays:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-spread-love-message-5670351-512D6D-300x300.png" alt="A purple icon of a megaphone with a heart in a speech bubble."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Be Our Voice to Support Pediatric Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Join our online community! Follow us on 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.facebook.com/SolvingKidsCancer/" target="_blank"&gt;&#xD;
      
           Facebook
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.instagram.com/solvingkidscancer/?hl=en" target="_blank"&gt;&#xD;
      
           Instagram
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            for the latest updates on our impact against childhood cancer. Rally your network to support pediatric cancer research this holiday season. Here’s a sample post to get you started:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every kid deserves to grow up! This holiday season, join me in giving back during the holidays by supporting @SolvingKidsCancer, an organization that’s dedicated to raising awareness and funds for life-saving research for pediatric cancer! Together, we can help kids fighting the most deadly cancers. → 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.solvingkidscancer.org/" target="_blank"&gt;&#xD;
      
           solvingkidscancer.org
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Create Your Own Fundraiser
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Turn your passions into action by designing your unique fundraising event or campaign to give back during the holidays! From bake sales to marathons, the possibilities are endless. Inspired by a relative’s experience with 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://goldencasinonews.com/casino-utan-svensk-licens/" target="_blank"&gt;&#xD;
      
           casinon utan licens
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , you can incorporate unique gaming elements that engage participants, uniting your community and channeling that collective energy into a powerful force for change. Simply sign up on our platform and you’ll receive instant access to a suite of resources to help every step of the way.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-donation-3115407-512D6D-150x150.png" alt="A hand is holding a heart in its palm."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=arden_lorlatinib_blog&amp;amp;utm_campaign=gen&amp;amp;utm_source=arden_lorlatinib_blog&amp;amp;utm_medium=blog&amp;amp;utm_content=lorlatinib_blog1_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Create-a-fundraiser-button-300x75.png" alt="A pink button that says create a fundraiser on it"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-level-up-5998291-512D6D-150x150.png" alt="A line icon of three arrows pointing up and down."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Double Your Donation with Employer Matching
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Could your contribution have even more impact? Absolutely! Many employers offer gift-matching programs, potentially doubling or tripling your impact for pediatric cancer. A donation can be made by contacting your HR department and choosing Solving Kids’ Cancer as your preferred charity.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Fundraise for Your Birthday
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This year, make your birthday about more than just cake and gifts. Invite friends and family to give to Solving Kids’ Cancer in lieu of traditional presents to support pediatric cancer. Your decision can change lives by providing funds for research specifically aimed at finding safer, more effective treatments for high-risk childhood cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-birthday-1432810-512D6D-150x150.png" alt="A purple icon of a birthday cake with three candles."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-art-supplies-4263430-512D6D-150x150.png" alt="A purple icon of a pencil , a tube of paint , and a brush."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Get Creative for a Cause
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Whether you’re skilled at making custom ornaments, holiday cards, or other handmade treasures, you can 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fundraising-ideas-and-inspiration/" target="_blank"&gt;&#xD;
      
           use your talents to support groundbreaking research
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            at Solving Kids’ Cancer. Don’t forget to involve the kids, too! It’s a heartfelt way to give back during the holidays, turning art into action and hope into tangible help.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Give a Gift in a Child’s Honor
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This season, give a gift that gives back with the added benefit of a donation tax deduction. When you 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=blog_holiday_2023&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_holiday_2023&amp;amp;utm_medium=blog&amp;amp;utm_content=blog_holiday_cta" target="_blank"&gt;&#xD;
      
           donate in honor of a child
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            battling cancer, you’re not just giving money; you’re giving hope. Your support is a step toward safer, more effective treatments and a future where every kid gets to grow up. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-gift-6192154-512D6D-150x150.png" alt="A purple gift box with a white bow on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=blog_holiday_2023&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_holiday_2023&amp;amp;utm_medium=blog&amp;amp;utm_content=blog_holiday_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate-Now-button-300x75.png" alt="A pink donate now button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Sat, 04 Nov 2023 13:14:59 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/skc-holiday-2023</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2.png">
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      </media:content>
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      </media:content>
    </item>
    <item>
      <title>2023 Year-in-Review</title>
      <link>https://www.solvingkidscancer.org/blog/2023-year-in-review</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Pediatric Cancer Research Advancements: Solving Kids’ Cancer’s Year-in-Review
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Message from Scott Kennedy, Executive Director
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Dear Friends and Supporters, 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As we reflect on the year gone by, my heart is filled with gratitude and pride for what we’ve achieved together in 2023. I want to start by extending a heartfelt thank you to each one of our donors, volunteers, collaborators, and families who stand with us in our relentless fight against childhood cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As a pediatric cancer charity focused on funding clinical trials for the most high-risk and fatal childhood cancers, your contributions have been instrumental in securing vital childhood cancer research funding — allowing us to spearhead and accelerate 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/skc-funded-projects/" target="_blank"&gt;&#xD;
      
           groundbreaking treatments
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Just as my son Hazen dreamed of creating new medicines to help others, we’ve not only dreamed, but also transformed those dreams into tangible hope for countless families. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Big Leaps in Pediatric Cancer Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2023 was a pivotal year for pediatric cancer research, and Solving Kids’ Cancer was at the forefront:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-jump-1682137-512D6D-300x300.png" alt="A purple icon of a person jumping in the air with their arms outstretched."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Brain Tumor Breakthroughs:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Together with top New York City universities, we launched a novel project to tackle high-risk childhood brain tumors using advanced drug delivery methods.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • More Hope through MiniVan:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Our transatlantic 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/poppys-journey/" target="_blank"&gt;&#xD;
      
           MiNivAn trial
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            expanded, offering innovative combination immunotherapy to more children with high-risk neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Firsts in ETMR Trials:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            We achieved a landmark with the first approved trial protocol for kids with 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol/" target="_blank"&gt;&#xD;
      
           ETMR brain tumors
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , involving multiple international centers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Advancing Neuroblastoma Research:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            We led the funding of an innovative trial to quickly enroll kids with a distinct neuroblastoma mutation, initiating a
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/collaborative-effort-of-nonprofits-yields-big-results-for-treating-high-risk-neuroblastoma/" target="_blank"&gt;&#xD;
      
            targeted therapy approach
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-global-community-6139825-512D6D-300x300.png" alt="A group of people are standing around a globe."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Leadership in Global Teamwork 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • PBTRN: A New Era of Collaboration: Our launch of the Pediatric Brain Tumor Research Network (PBTRN) initiated a groundbreaking alliance among NYC cancer centers to enhance research cooperation.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Push for Data Sharing: We led a pioneering advocacy for open-access critical biomarker data, aiming to refine treatment paths for neuroblastoma globally.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Influencing Statewide Strategies: We played a key role in shaping the pediatric segment of New York State’s upcoming Cancer Control Plan,1 including priorities for pediatric cancer research funding.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Global Dialogue at Neuroblastoma Symposium: Our 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/" target="_blank"&gt;&#xD;
      
           global symposium
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            forged a vital knowledge-sharing space for parents, experts, and caregivers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-research-6224533-512D6D-300x300.png" alt="A light bulb is sitting on a piece of paper next to a magnifying glass."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Our Research in the Spotlight 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Challenges of Childhood Cancer:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/35373890/" target="_blank"&gt;&#xD;
      
           A research paper authored by SKC
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            received critical acclaim and was featured in a 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.nytimes.com/2023/10/06/opinion/childhood-cancer-recovery.html" target="_blank"&gt;&#xD;
      
           New York Times article
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , shedding light on the unique challenges faced in childhood cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Advocacy in Pediatric Cancer Research: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Our scientific publication in the Journal of Clinical Oncology underscored the indispensable role of advocacy groups like SKC in the pediatric cancer research landscape.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Prioritizing Life-Saving Drugs:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            An 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ejcancer.com/article/S0959-8049(23)00302-7/fulltext" target="_blank"&gt;&#xD;
      
           SKC co-authored research paper
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            made influential recommendations for a class of drugs known as DNA damage response inhibitors, outlining strategies for their impactful investigation in clinical research for children.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Celebrating Long-Term Success:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Our childhood cancer research funding investments and advocacy from 2007 and 2008 led to positive clinical trial results for one 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://onlinelibrary.wiley.com/doi/10.1002/ijc.34569" target="_blank"&gt;&#xD;
      
           treatment option
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and a potential 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.navlindaily.com/article/18975/fda-advisory-committee-backs-investigational-drug-for-pediatric-neuroblastomas" target="_blank"&gt;&#xD;
      
           FDA approval for another in 2023
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/noun-community-5503569-512D6D-300x300.png" alt="A group of people are sitting around a heart."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Events That Brought Us Together
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Spring Celebration Gala:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            Our annual gala was a resounding success, uniting supporters and raising critical funds for ongoing pediatric cancer research.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Summer Luncheon:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            This sold-out event rallied support from Long Island communities, celebrating SKC’s milestones and looking ahead to future endeavors.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Whiskey for a Cause:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            Our unique whiskey tasting event at Edrington Spirits headquarters served as a beautiful backdrop for sharing SKC’s journey, fostering new connections, and solidifying support for our cause.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           We’ve made great strides this year in pediatric cancer research, but our work is far from complete. Your support is the driving force behind advancing new research and treatments that could save children’s lives.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How you can make an impact this holiday season
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Create Your Own Fundraiser: Using our easy-to-use platform, personalize your campaign and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc?rbref=blog_yearinreview_2023&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_yearinreview_2023&amp;amp;utm_medium=blog&amp;amp;utm_content=blog_yearinreview_diy_cta" target="_blank"&gt;&#xD;
      
           turn your passions into action
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            for kids with cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Spread the Word on Social Media: Help raise awareness by sharing our mission and updates on your networks. You can find and tag us on 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.facebook.com/SolvingKidsCancer" target="_blank"&gt;&#xD;
      
           Facebook
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.instagram.com/solvingkidscancer/" target="_blank"&gt;&#xD;
      
           Instagram
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Make a Tax-Deductible Donation: 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=blog_yearinreview_2023&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_yearinreview_2023&amp;amp;utm_medium=blog&amp;amp;utm_content=blog_yearinreview_cta" target="_blank"&gt;&#xD;
      
           Every contribution
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , big or small, helps us get one step closer to our goal of increasing childhood cancer research funding.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/BeTheOne/Donate?rbref=blog_holiday_2023&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_holiday_2023&amp;amp;utm_medium=blog&amp;amp;utm_content=blog_holiday_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/button-300x100.png" alt="A purple button that says give today on it"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           From everyone at Solving Kids’ Cancer, thank you for your generosity and for believing in a future where 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           every kid has the chance to grow up. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           With deep gratitude,
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Scott-first-name-signature.png" alt="A black and white signature of scott on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Scott Kennedy
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Executive Director &amp;amp; Co-Founder
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 New York State Comprehensive Cancer Control Plan 2018-2023 – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.nyscancerconsortium.org/img/uploads/file/2018-2023%20NYS%20Comprehensive%20Cancer%20Control%20Plan.pdf" target="_blank"&gt;&#xD;
      
           https://www.nyscancerconsortium.org/img/uploads/file/2018-2023%20NYS%20Comprehensive%20Cancer%20Control%20Plan.pdf
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Mon, 30 Oct 2023 13:21:32 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/2023-year-in-review</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Nov-1-Feature-Image.png">
        <media:description>thumbnail</media:description>
      </media:content>
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        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>Research and Care: Neuroblastoma Parent Global Symposium 2023</title>
      <link>https://www.solvingkidscancer.org/blog/research-and-care-neuroblastoma-parent-global-symposium-2023</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Research &amp;amp; Care: Neuroblastoma Parent Global Symposium 2023
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Mark your calendars for the return of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.nbparentsymposium.com/" target="_blank"&gt;&#xD;
      
           Neuroblastoma Parent Global Symposium
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            on Friday, November 3, 2023. A free virtual event, this neuroblastoma conference brings together parents, researchers, medical professionals, clinicians, and charity leaders from across the globe to discuss the latest breakthroughs in 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            research and supportive care.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hosted online and free to access from anywhere around the world, this year’s event will feature two main tracks, one focused on the neuroblastoma treatments and the other focused on psychosocial support for neuroblastoma. The event program will include live discussions, presentations from internationally renowned experts, networking opportunities, specialized conversation rooms, and Q&amp;amp;A sessions.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://www.nbparentsymposium.com/#sign-up" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Email-sign-up-Button-300x75.png" alt="A pink sign up for updates button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Here’s a sneak peek of what attendees can expect:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Latest Developments in Neuroblastoma Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The dynamic field of neuroblastoma research continues to expand, with the latest insights providing hope for affected families worldwide. This year’s symposium will shine a spotlight on these 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/collaborative-effort-of-nonprofits-yields-big-results-for-treating-high-risk-neuroblastoma/" target="_blank"&gt;&#xD;
      
           cutting-edge developments
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Attendees will have an opportunity to delve deep into the scientific advances and understand their implications for the patients. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Overview of Frontline Neuroblastoma Treatments
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Understanding the frontline options for 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           neuroblastoma cancer treatment
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is crucial for parents and caregivers. This segment of the symposium will outline the current standard therapies available. It will clarify the procedures, expected outcomes, and potential side effects. Having this knowledge can empower parents to make informed decisions and advocate for their child’s best interests.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Treatment for Relapse and Refractrory Neuroblastoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Dealing with relapsed or refractory neuroblastoma poses unique challenges. This track will offer insights into the latest options for 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/poppys-journey/" target="_blank"&gt;&#xD;
      
           neuroblastoma therapy
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            specifically designed to address these more resistant forms of the disease. Renowned specialists will share their expertise, ensuring attendees have a comprehensive view of the latest therapeutic strategies.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Advances in Neuroblastoma Immunotherapy
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Immunotherapy is rapidly emerging as a powerful tool in the fight against neuroblastoma. The symposium will delve into the newest approaches, including CAR T cells, detailing how the body’s immune system can be harnessed to target and destroy neuroblastoma cells. The sessions will cover the latest trials, results, and the promising future this modality holds.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Advocacy in Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Promoting research is essential for the advancement in the field of neuroblastoma. This segment will empower parents and caregivers with knowledge about the ongoing studies, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and how they can play a role in advancing the field. Expert-led panels will shed light on the importance of advocacy and provide tools for active participation.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/NPGS-23-infographic-1024x354.png" alt="Over the last three years , we have broadcasted in over 58 countries"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Supportive Care
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like/" target="_blank"&gt;&#xD;
      
           Living with neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is a journey that extends beyond the clinic. This neuroblastoma conference emphasizes the importance of holistic support, addressing both the emotional and practical needs of families throughout each phase of the experience. With expert advice and shared stories, we seek to nurture the entire family unit, ensuring no one feels alone in this journey.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Psychosocial Support
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The mental and emotional well-being of affected families is key to overcoming the hardships of the disease. This session will focus on strategies to cope, address anxiety, and build resilience. Therapists and counselors will share practical tools for navigating the psychosocial challenges that arise.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Post-Treatment and Late Effects
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The journey doesn’t end after treatment. This segment will help parents understand and prepare for the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           potential late effects
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            of neuroblastoma treatment. Specialists will discuss monitoring, managing, and mitigating these long-term impacts on children’s health.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Grief and Loss
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Navigating the profound emotions that come with 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/lessons-before-and-after-childhood-cancer/" target="_blank"&gt;&#xD;
      
           grief and loss
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            requires compassion and understanding. This sensitive segment will offer a safe space for parents to share, reflect, and find solace. Expert facilitators will guide discussions, ensuring attendees feel supported.
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           Stories of Hope – Living and Achieving Post-Treatment
          &#xD;
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hope is the thread that binds the neuroblastoma community. In this uplifting session, parents and survivors will share their inspiring journeys post-treatment. Their stories will illuminate the path to resilience, achievement, and the potential for a vibrant life beyond neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The Neuroblastoma Parent Global Symposium promises a comprehensive, parent-centric experience. From expert talks to parent perspectives, from enlightening panel discussions to Q&amp;amp;A sessions — this is an event curated by parents, for parents. Let’s come together to chart the path forward in the world of neuroblastoma care and research.
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://www.nbparentsymposium.com/#sign-up" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Email-sign-up-Button-300x75.png" alt="A pink sign up for updates button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/NPGS_2023_webpage-logo.png" length="44384" type="image/png" />
      <pubDate>Tue, 03 Oct 2023 13:26:06 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/research-and-care-neuroblastoma-parent-global-symposium-2023</guid>
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    </item>
    <item>
      <title>Bone Cancer and Sarcoma Awareness Month</title>
      <link>https://www.solvingkidscancer.org/blog/sarcoma-and-bone-cancer-awareness</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           5 Key Facts About Bone Cancer and Sarcoma Awareness Month
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           July is recognized as Bone Cancer and Sarcoma Awareness Month, and it’s the perfect time to learn more about these rare and challenging cancers that affect our young superheroes. 
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    &lt;a href="https://solvingkidscancer.org/blog/sarcoma-in-children/" target="_blank"&gt;&#xD;
      
           Sarcoma
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            and 
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    &lt;a href="https://solvingkidscancer.org/blog/osteosarcoma-in-children/" target="_blank"&gt;&#xD;
      
           bone cancer
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            can have a huge impact on the lives of young patients and their families, causing physical and emotional challenges that extend far beyond the diagnosis itself. But with knowledge, support, and a sprinkle of hope, we can make a difference!
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           Here are 5 key facts you should know about these 
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    &lt;a href="https://solvingkidscancer.org/role-impact/" target="_blank"&gt;&#xD;
      
           rare childhood cancers
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            and how you can join the mission to support the children and families affected.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/sarcoma-blog-pic-2-300x256.png" alt="A woman is holding a yellow ribbon in her hand for sarcoma and bone cancer awareness"/&gt;&#xD;
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           1. Survival Rates Vary
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           Did you know that survival rates for sarcoma and bone cancer depend on various factors, including the type and stage of cancer? According to the American Cancer Society, the five-year survival rate for soft tissue sarcomas is 65.8 percent, while it is slightly higher at 68.9 percent for bone and joint sarcomas.1 These rates drop significantly based on how far the cancer has spread at the time of diagnosis. Early detection and timely treatment play a crucial role in improving survival rates. So, let’s spread the word and catch it early!
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           Dr. Kurt Weiss’ Story
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           At age 15, Dr. Kurt Weiss was diagnosed with osteosarcoma, a rare and aggressive bone cancer. Despite the challenges, including a leg amputation, he overcame the disease thanks to a life-saving clinical trial. Today, Dr. Weiss is now a surgeon and researcher dedicated to finding a cure for sarcoma.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate" target="_blank"&gt;&#xD;
      
           DONATE NOW]
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            [READ MORE ABOUT DR. WEISS]
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Kurt-mini-for-blog.png" alt="A man with glasses and a beard is smiling in a circle"/&gt;&#xD;
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           2. Diagnosing Bone Cancer and Sarcoma: A Real Challenge
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           Diagnosing these cancers is like solving a tricky puzzle. Sarcomas start in connective tissues like muscles, fat, nerves, and blood vessels and can sometimes look like other, less scary tumors. This can make them hard to spot right away. Imagine finding a painless lump on your leg — it’s easy to ignore until it starts causing problems. That’s how soft tissue sarcomas can sneak by unnoticed.
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    &lt;/span&gt;&#xD;
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           Bone cancers, like osteosarcoma, often show up as pain and swelling in the bone. This can be mistaken for a sports injury or just growing pains. Think about a kid complaining of leg pain after soccer practice — it might seem normal, but it could be something more serious. This is why getting the right tests, like MRIs and CT scans, is so important. These advanced scans, along with biopsies, help doctors figure out what’s really going on. Because these cancers are rare, not all doctors are familiar with them, so seeing a specialist can make all the difference.
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            Sarcoma Symptoms:
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             Look out for a lump or swelling that doesn’t go away, pain in the affected area, and sometimes unexplained weight loss or feeling really tired.
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            Bone Cancer Symptoms:
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             Watch for persistent bone pain, swelling, and even fractures in bones that seem too weak.
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           3. The Hidden Battle: Risk of Secondary Cancers
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  &lt;p&gt;&#xD;
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           Treating sarcoma and bone cancer is like fighting one big battle, but there’s a hidden enemy we also need to watch out for — secondary cancers. The sarcoma treatments that help kids, like surgery, chemotherapy, and radiation therapy, can often leave 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           long-lasting effects
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           , damaging cells and organs during a critical period of growth.
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            Surgery:
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             This can lead to pain, limited mobility, or differences in limb length. Rehabilitation and physical therapy become essential parts of the recovery journey.
            &#xD;
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            Chemotherapy:
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             Known for causing fatigue, nausea, and hair loss, it can also weaken the immune system and increase infection risks.
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            Radiation Therapy:
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             This might cause skin irritation and fatigue initially, but it can also have long-term effects like impaired bone growth.
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           Survivors of sarcoma and bone cancer bravely face these challenges, but they also have to be vigilant about the risk of developing secondary cancers later in life. These could be stomach cancer, thyroid cancer, melanoma, or acute myeloid leukemia. Why does this happen? It’s likely due to previous cancer treatments, genetic factors, or other unknown causes.
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            Stay Ahead:
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             Regular follow-up visits and screenings are crucial. These check-ups help catch any potential secondary cancers early, ensuring our young warriors stay safe and healthy.
            &#xD;
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            Join the Conversation:
           &#xD;
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      &lt;span&gt;&#xD;
        
             Have you or someone you know faced these challenges? Share your story on 
           &#xD;
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      &lt;a href="https://www.facebook.com/SolvingKidsCancer/" target="_blank"&gt;&#xD;
        
            our social media
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            . Your experiences can provide hope and support to others.
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           4. Inherited Disorders and Sarcoma
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           Both bone cancer and sarcoma in children can be linked to certain 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/childhood-cancer-predisposition-syndromes/" target="_blank"&gt;&#xD;
      
           inherited disorders
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . For example, children with Li-Fraumeni syndrome, a rare genetic condition, have an increased risk of developing osteosarcoma, the most common type of bone cancer.2  Genetic counseling and regular check-ups are essential for individuals with these inherited disorders to monitor their health closely and detect any bone cancer and sarcoma symptoms early.
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    &lt;/span&gt;&#xD;
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           5. Ways to Raise Bone Cancer and Sarcoma Awareness 
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      &lt;span&gt;&#xD;
        
            ﻿
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           Raising awareness about childhood sarcoma and bone cancer is essential to promote early detection, research advancements, and support for affected families. Here are some ways you can contribute to bone cancer and sarcoma awareness: 
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  &lt;/p&gt;&#xD;
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&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/gear-head.png" alt="A purple icon of a person 's head with a gear in it."/&gt;&#xD;
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           Educate
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           :
          &#xD;
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            Learn about pediatric sarcoma and bone cancer signs, symptoms, and risk factors. Share this knowledge to promote early recognition and intervention.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h4&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/trio.png" alt="A group of people standing next to each other with their arms outstretched."/&gt;&#xD;
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           Get involved:
          &#xD;
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            Participate in events like walks, seminars, or social media campaigns, and wear a sarcoma awareness ribbon to show your support.
          &#xD;
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  &lt;/h4&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/megaphone.png" alt="A purple line drawing of a megaphone on a white background."/&gt;&#xD;
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           Advocate
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           : Write to local representatives and policymakers, urging increased funding for research to improve treatment options, outcomes, and quality of life.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h4&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/cash-in-hand.png" alt="A hand is holding a dollar sign in its palm."/&gt;&#xD;
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           Donate
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           : Make a difference by donating to pediatric cancer organizations that invest in research and provide vital resources to families.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h4&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Support Solving Kids’ Cancer This Bone Cancer and Sarcoma Awareness Month
          &#xD;
    &lt;/strong&gt;&#xD;
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    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer is dedicated to investing in groundbreaking studies and clinical trials, aiming to unlock new treatments and improve survival rates for children with rare childhood cancers like sarcoma and bone cancer. Some of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://youtu.be/Z1D-7i4oy1s" target="_blank"&gt;&#xD;
      
           latest research for sarcoma
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            explores revolutionary approaches, including using high doses of a drug called ifosfamide, which has shown better results for certain hard-to-treat types of sarcoma. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When you give to Solving Kids’ Cancer, you’re not just donating; you’re fueling life-saving research initiatives, providing better outcomes, and transforming the lives of children battling these challenging diseases — 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_bonecancersarcomamonth&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_bonecancersarcomamonth&amp;amp;utm_medium=blog&amp;amp;utm_content=bonecancersarcomamonth_cta_1" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/GIVE-768x81+%281%29.png" alt="A pink circle with the words `` give today '' written on it."/&gt;&#xD;
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           Source: 
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  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 July is Sarcoma and Bone Cancer Awareness Month – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.aacr.org/patients-caregivers/awareness-months/sarcoma-and-bone-cancer-awareness-month/" target="_blank"&gt;&#xD;
      
           https://www.aacr.org/patients-caregivers/awareness-months/sarcoma-and-bone-cancer-awareness-month/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 A higher than expected fraction of adolescent osteosarcoma patients carry a gene mutation that is often inherited – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.cancer.gov/news-events/press-releases/2015/osteosarcoma-tp53-inherited-gene-mutation-adolescents" target="_blank"&gt;&#xD;
      
           https://www.cancer.gov/news-events/press-releases/2015/osteosarcoma-tp53-inherited-gene-mutation-adolescents
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/sarcoma-blog-pic-2-300x256.png" length="122283" type="image/png" />
      <pubDate>Wed, 12 Jul 2023 19:34:02 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/sarcoma-and-bone-cancer-awareness</guid>
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    <item>
      <title>Lessons Before and After Childhood Cancer from a Mother</title>
      <link>https://www.solvingkidscancer.org/blog/lessons-before-and-after-childhood-cancer</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As a parent, your primary instinct is to protect and care for your children. But, what happens when your child is diagnosed with cancer? How do you navigate your family through the devastating diagnosis, harsh treatments and fears of recurrence? And, when the unthinkable happens — what does life look like after loss?
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The journey of a parent whose child has been diagnosed with cancer can be a difficult and emotional one, filled with challenges and uncertainties. In honor of Mother’s Day, we asked mom and childhood cancer advocate, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/what-is-hope-in-light-of-a-terminal-diagnosis/" target="_blank"&gt;&#xD;
      
           Lara Cady Weberling
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to share the lessons she’s learned before and after childhood cancer changed her life forever. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           1. Listen to Your Gut.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “It can be intimidating to question a physician but sometimes there is something that doesn’t sit right.“ 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When Lara’s son, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.hansjourney.blogspot.com/" target="_blank"&gt;&#xD;
      
           Hans
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , was just three years old, she noticed he had a small bruise in his groin area. Despite going back and forth between the pediatrician, urologist, getting X-rays and asking countless questions, she was still not getting the answers her family needed.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hans slowly became lethargic, fussy and his belly started to protrude. Doctors initially thought it could be an infection or a hernia, but Hans was not given any antibiotics. Lara shared, “It didn’t make any sense and it was incredibly frustrating.” It wasn’t until she drove Hans to the nearest children’s hospital that they received a diagnosis. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-3.jpg" alt="A young boy wearing a black shirt with a red tractor on it"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “Later that night I would hear the word 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            neuroblastoma
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            for the first time in my life, when the chief of radiology came in after our abdominal ultrasound in the ER. We’d be admitted to the 9th floor (pediatric oncology) that night and wouldn’t go home for 17 days,” Lara recalled.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As a parent or caregiver, you know your child best. If you notice any changes in your child’s health or behavior that concern you, trust your instincts and seek medical attention. Also, get a second opinion to ensure that you receive the correct diagnosis and the best possible care for your child. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           2. Find Your Circle.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “Navigating diagnosis changes everything about your life. It requires every gift and resource you have, It completely changes your relationship with everything and everyone. There is a desperation and urgency that is almost completely incomprehensible to anyone except a very small handful in your innermost circle of support.”
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           A childhood cancer diagnosis can be a difficult and overwhelming experience for the whole family. For Lara, it was essential to seek support to help her and her family navigate the challenges of pediatric cancer. Aside from relatives and friends, she also found encouragement from other families battling neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “I think it’s so important to seek connections with other families going through your same diagnosis when possible. You can start with your doctors and social workers, ask for any information and support groups specific to your child’s cancer type,” Lara explained.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Families battling childhood cancer often experience secondary trauma from feeling isolated during their journey. But, remembering you’re not alone and reaching out to other parents going through similar struggles can be one of your best childhood cancer resources as you help each other cope with the emotional, physical, and financial demands of the disease.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           3. Save Something for Yourself.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “It’s easy to give and give and give and not have much left. This can happen to anyone in modern society — cancer or not. So, save something just for yourself and your family.”
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Self-care is important for parents and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like/" target="_blank"&gt;&#xD;
      
           caregivers of children with cancer
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Taking care of yourself not only benefits you, but also your child and the rest of your family. When you prioritize your own health and well-being, you’ll be better equipped to provide the care and support that your child and family need. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “You need to feel your feelings! Feelings are for feeling. These are big huge gigantic feelings you will need to roll around in, talk about and process! You will need to let your child, partner and other siblings feel their feelings as well!” Lara emphasized.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hans’ pediatric cancer journey involved multiple 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           relapses
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , so it never felt like Lara and her family were on stable ground. To get through the daily battles, she advised parents: “You’ll have to find…some quiet, reflective time for prayer, meditation or contemplation. This is heavy, intense and so hard. It will hit you on every level.” 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Whether it’s in the waiting room, a hospital bed, or at home, making sure to enjoy every moment you have together as a family will also help to get through the challenges of childhood cancer. As Lara shared, “You can’t put your life on hold until the fight has been won. You have to enjoy moments of togetherness and find joy in every single day. Every day is an adventure, every day is a gift.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed+%281%29.png" alt="A family posing for a picture in front of a glass building"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           4. Hold on to the Memories.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “I love to remember the feeling of closeness that we shared…In the weeks before we lost him, he said some things that I will always cherish. He told me, ‘We’re the perfect match for love.’ And he told me there was no other mom for him but me. That’s pretty much all we need as moms, isn’t it?”
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Holding on to memories can be a valuable way to cope with the grief and loss of a child to childhood cancer. Those moments of light can help you in the midst of the pain and darkness grief brings and give you a sense of purpose to keep moving forward. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Though there will always be a “Hans-shaped hole” in their family’s hearts, Lara and her family honor Hans every day by recalling their memories of him. “To this day, the entire family still talks about Hans, makes jokes about him. He was such a character and everyone still celebrates and shares in who he was,” she said. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Today, Lara works as a donor recruiter, a role that helps her honor Hans’ memory by helping ensure blood products are available to pediatric cancer patients and other patients in need everywhere. 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           5. Get Involved.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “We benefited from clinical trials, it is only natural to give back and do our part to put other children through trials as well through our fundraising activities…government, hospital and pharmaceutical resources only go so far…unfortunately, it falls to charities to fill that [childhood cancer] funding gap…”
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Another impactful way that Lara and her family have honored Hans’ memory is by giving back. When Hans was given his initial neuroblastoma diagnosis, he had a 50/50 chance of relapsing after standard treatment. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           Clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            helped provide him with the latest treatment options that were not yet available to everyone.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For Hans to receive the best childhood cancer treatments, Lara and her family had to travel to doctors and hospitals across the country for six years. It was a huge financial burden for Lara and her husband, so when their family and friends organized a fundraiser for them that raised over $20,000 within three weeks, it was a lifesaver.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lara shared, “The love and support that we received put us in a position that we will spend the rest of our lives giving back. It just becomes part of your life, part of your calendar year to do so!” 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           After losing Hans, Lara and her family have given back to the pediatric cancer community in numerous ways by fundraising, advocating, speaking at multiple childhood cancer conferences, such as the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/learn-and-connect-neuroblastoma-parent-symposium-2022/" target="_blank"&gt;&#xD;
      
           Neuroblastoma Symposium
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and even starting a support network for parents called NPACK (Neuroblastoma – Parents, Angels, Caregivers and Kids), where families share information and neuroblastoma stories.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Today, she continues to be a voice in the community as a member of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.endkidscancer.org/new-approaches-to-neuroblastoma-therapy" target="_blank"&gt;&#xD;
      
           New Approaches to Neuroblastoma Therapy (NANT)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            consortium parent advisory panel.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Create Your Own Fundraiser and Support Families Battling Childhood Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Now more than ever, families battling childhood cancer like Lara’s did, need your help. Support families in the fight against cancer by creating a fundraiser to fund lifesaving childhood cancer research. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/diy-fundraiser/" target="_blank"&gt;&#xD;
      
           Solving Kids’ Cancer’s Create Your Own Fundraiser program
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            allows you to personalize, share and manage a childhood cancer fundraiser from start to finish. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           From hosting a bake sale to celebrating an anniversary to honoring a loved one, and so much more, you can help further our mission of funding the most promising research to accelerate better treatments for childhood cancer — 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_bonecancersarcomamonth&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_bonecancersarcomamonth&amp;amp;utm_medium=blog&amp;amp;utm_content=bonecancersarcomamonth_cta_1" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-4-768x192-3c48061e.png" alt="A pink button that says `` create a fundraiser today ''."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-3.jpg" length="8113" type="image/jpeg" />
      <pubDate>Fri, 05 May 2023 19:37:36 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/lessons-before-and-after-childhood-cancer</guid>
      <g-custom:tags type="string" />
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        <media:description>thumbnail</media:description>
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        <media:description>main image</media:description>
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    </item>
    <item>
      <title>Create Your Own Fundraiser Fundraising Idea: Audrey’s Angels</title>
      <link>https://www.solvingkidscancer.org/blog/fundraising-ideas-and-inspiration</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           It began with a life-altering diagnosis.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In 2010, 5-year-old Audrey was diagnosed with stage 4 neuroblastoma. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           Neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is a cancerous tumor that develops in the nervous system of babies and very young children. Each year, approximately 800 children get diagnosed with neuroblastoma in the United States.1 With stage 4 neuroblastoma, young Audrey was in the high-risk category, meaning the disease had already rapidly spread and grown in critical areas of her body.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Search for a Cure
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Since 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           high-risk neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is difficult to treat, Audrey had to undergo intensive treatments. Standard childhood cancer treatments can have both short-term and long-term effects on a child’s health and well-being. While these treatments are designed to save lives and prevent cancer from recurring, they can also cause 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           significant side effects
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            that may impact a child’s quality of life.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For ten years, Audrey underwent severe treatments at various hospitals across the country. She also participated in several clinical trials in search of a cure. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           Clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            provide access to new treatments that are not yet available to the general public. Through childhood cancer research, these treatments may be more effective than current therapies, and participating in a clinical trial can provide children with the latest advances in cancer treatment.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-1-768x966.jpg" alt="A book called audrey 's angels sits on a table"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Fundraising Idea
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As a high-risk neuroblastoma survivor, Audrey knew firsthand the importance of raising awareness and funds to help advance childhood cancer research. So, one day, when Audrey was 11 years old, she gathered four of her closest friends, Laura, Mary Campbell, Mary Kent, and Ellie, to brainstorm fundraising ideas to help kids with cancer like her. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In 2016, the childhood cancer fundraiser organization, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://audreys-angels.com/" target="_blank"&gt;&#xD;
      
           Audrey’s Angels
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , was born. Using recycled aluminum soda cans, the team of friends made colorful “angel” ornaments in a variety of beautiful patterns and colors. The girls then began selling their vibrant handmade ornaments at gift fairs throughout the Atlanta, Georgia area. To help other children undergoing cancer treatments, Audrey and her friends donated the money they raised to childhood cancer nonprofits like Solving Kids’ Cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Fundraising Idea
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As a high-risk neuroblastoma survivor, Audrey knew firsthand the importance of raising awareness and funds to help advance childhood cancer research. So, one day, when Audrey was 11 years old, she gathered four of her closest friends, Laura, Mary Campbell, Mary Kent, and Ellie, to brainstorm fundraising ideas to help kids with cancer like her. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In 2016, the childhood cancer fundraiser organization, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://audreys-angels.com/" target="_blank"&gt;&#xD;
      
           Audrey’s Angels
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , was born. Using recycled aluminum soda cans, the team of friends made colorful “angel” ornaments in a variety of beautiful patterns and colors. The girls then began selling their vibrant handmade ornaments at gift fairs throughout the Atlanta, Georgia area. To help other children undergoing cancer treatments, Audrey and her friends donated the money they raised to childhood cancer nonprofits like Solving Kids’ Cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-2-768x384.jpg" alt="A group of young girls are standing next to each other holding a check."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Create Your Own Childhood Cancer Fundraiser to Help Kids
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Like Audrey and her friends, you can help kids with cancer by creating your own fundraiser to support childhood cancer research! Fundraising can help raise money for much-needed research and provide resources for kids with cancer and their families. With 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/diy-fundraiser/" target="_blank"&gt;&#xD;
      
           Solving Kids’ Cancer’s Create Your Own Fundraiser program
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , you can personalize a cancer fundraiser in a fun and creative way, while contributing to our mission of accelerating innovative treatments to cure children with the most fatal cancers — 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.  
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-4-768x192.png" alt="A pink button that says `` create a fundraiser today ''."/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Sources
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    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Late Effects and Survivorship Issues in Patients with Neuroblastoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6111874/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6111874/
          &#xD;
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      <pubDate>Mon, 24 Apr 2023 11:33:38 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/fundraising-ideas-and-inspiration</guid>
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    </item>
    <item>
      <title>5 Ways to Support National Cancer Research Month</title>
      <link>https://www.solvingkidscancer.org/blog/national-cancer-research-month</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Ways to Support National Cancer Research Month
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           May is National Cancer Research Month, when we spotlight the vital work being done to combat a disease affecting millions worldwide. Each year in the United States, 1.9 million new cancer diagnoses are made,1 and tragically, cancer remains the leading cause of death by disease among children.2 Despite these alarming figures, pediatric cancer research receives only a fraction of government funding.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we help accelerate cutting-edge treatments that offer the best hope for children battling the most aggressive forms of cancer. Your support plays a pivotal role in advancing this mission.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Here are 5 ways you can make a difference during National Cancer Research Month:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Cancer-research-blog-image-282x300.png" alt="A woman in a lab coat looks through a microscope"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           1. Learn about the Latest News in Cancer Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Keep up with the latest breakthroughs in cancer research to better fight childhood cancer. Staying informed helps you raise awareness of the challenges of the childhood cancer community and advocate for new cancer breakthroughs that are advancing treatments. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How to keep updated:
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Subscribe to Newsletters: Get regular updates from respected cancer research organizations.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Join Webinars
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           : Learn directly from experts during 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/" target="_blank"&gt;&#xD;
      
           online talks and discussions
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Follow Leading Experts: Connect with 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            reputable sources and researchers on podcasts
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            and social media for the latest news.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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           2. Read and Share Childhood Cancer Patient Stories
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This Cancer Research Month, take a moment to 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/the-latest/the-latest-all-2/" target="_blank"&gt;&#xD;
      
           read stories of young patients
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            affected by cancer. Each story shines a light on their struggles and strengths, showing why we urgently need more childhood cancer funding. When you share these stories with family and friends, you help highlight the importance of cancer breakthroughs in research and encourage more support for these brave kids.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Arden’s Story
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At just 15 months old, Arden was diagnosed with ALK neuroblastoma, a rare and aggressive form of cancer. Thanks to childhood cancer funding from Solving Kids’ Cancer, Arden was able to receive next-generation treatments that saved her life.
           &#xD;
      &lt;br/&gt;&#xD;
      
           [
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=ncrmonth_blog_240501&amp;amp;utm_campaign=gen&amp;amp;utm_source=ncrmonth_blog_240501&amp;amp;utm_medium=blog&amp;amp;utm_content=ncrmonth_blog_cta" target="_blank"&gt;&#xD;
      
           DONATE NOW
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate" target="_blank"&gt;&#xD;
      
           ]
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            [
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/ardens-story-of-hope/" target="_blank"&gt;&#xD;
      
           READ MORE ABOUT ARDEN
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ]
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Megan-n-Arden-blog-300x300.png" alt="A woman and a baby are smiling in a purple circle"/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           3. Start a Fundraiser for Pediatric Cancer Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hosting a fundraiser is a powerful way to help children battling cancer. With Solving Kids’ Cancer’s DIY fundraising program, you can set up your own event at your own pace. Whether you choose to do it solo or involve your community, every step you take boosts vital childhood cancer research funding, leading to the discovery of new treatments. Getting started is simple, and the impact of your efforts can bring us closer to a cure. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/other-ways-to-support/" target="_blank"&gt;&#xD;
      
           Join us and make a difference today
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           !
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           4. Share Your Fundraising Stories and Inspire Others
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Once you’ve hosted your event, share your story to inspire others. Whether it’s a post on social media, a community blog entry, or a conversation at a local event, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/easy-fundraising-ideas-for-childhood-cancer-awareness/" target="_blank"&gt;&#xD;
      
           every story told has the potential to encourage more people to start fundraisers of their own
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Your experience can spark enthusiasm and action, multiplying the impact on vital pediatric cancer research.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evelyn-lightbulb2-224x300+%281%29.png" alt="A little girl in a hospital bed holding a light bulb"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           5. Donate to Support Pediatric Cancer Research 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Since only 4% of all cancer funding goes toward pediatric cancer research,2 researchers rely on pediatric cancer nonprofits, like Solving Kids’ Cancer, to fill the funding gap. When you give to Solving Kids’ Cancer, you help us find, fund, and advocate for promising childhood cancer research that can give kids fighting the most fatal cancers a second chance at life — because every kid deserves to grow up.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=ncrmonth_blog_240501&amp;amp;utm_campaign=gen&amp;amp;utm_source=ncrmonth_blog_240501&amp;amp;utm_medium=blog&amp;amp;utm_content=ncrmonth_blog_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Give-Today-button-300x75+%282%29.png" alt="A pink button that says give today on it"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Cancers among younger Americans are on the rise, a new study shows
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.washingtonpost.com/wellness/2023/08/16/young-patients-breast-gastrointestinal-cancer/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.washingtonpost.com/wellness/2023/08/16/young-patients-breast-gastrointestinal-cancer/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 Childhood Cancer Fact Library – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/" target="_blank"&gt;&#xD;
      
           https://cac2.org/interest-groups/awareness/childhood-cancer-fact-library/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Wed, 19 Apr 2023 19:41:33 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/national-cancer-research-month</guid>
      <g-custom:tags type="string" />
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    <item>
      <title>Collaborative Effort of Nonprofits Yields Big Results for Treating High-Risk Neuroblastoma</title>
      <link>https://www.solvingkidscancer.org/blog/collaborative-effort-of-nonprofits-yields-big-results-for-treating-high-risk-neuroblastoma</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           FOR IMMEDIATE RELEASE
           &#xD;
      &lt;br/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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           Collaborative Effort of Nonprofits Yields Big Results for Treating High-Risk Neuroblastoma
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  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           New York, NY, April 3, 2023 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           —
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The collaborative efforts of eight nonprofit organizations to impact survival rates of children with high-risk neuroblastoma by funding innovative clinical research has just resulted in very promising results. This collaboration, led by Solving Kids’ Cancer, supported the testing of lorlatinib as a targeted drug therapy for treating neuroblastoma tumors that have an alteration in the ALK gene. The clinical trial reported significant responses in relapsed and refractory patients who had disease that was resistant to other therapies.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The findings, recently published in Nature Medicine by senior study author Yael P. Mossé, MD, Professor of Pediatrics in the Cancer Center at Children’s Hospital of Philadelphia (CHOP) and colleagues [link], show that lorlatinib is safe and tolerable and resulted in far more responses than the first-generation ALK inhibitor crizotinib. This work has led to rapidly incorporating this drug in a phase 3 trial for newly diagnosed children with ALK-driven high-risk neuroblastoma, instead of crizotinib. The process took 4.5 years from testing the drug in phase 1 to phase 3, in contrast to 16 years for dinutuximab, the most recent drug approved for first line therapy for neuroblastoma
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neuroblastoma is an aggressive pediatric cancer that develops from early nerve cells, often appearing as a solid tumor in the chest or abdomen. The disease affects very young children, and accounts for up to 10% of childhood cancer deaths. Less than 50% of patients with high-risk disease survive, and researchers continue to identify new ways to treat the disease. With the discovery of subtypes that have mutations that can be targeted, drugs like lorlatinib can “turn off” the ALK mutated driver of the cancer cell and result in dramatic responses and even complete remission.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “We are so pleased and excited about these significant findings,” said Scott Kennedy, Executive Director of Solving Kids’ Cancer, “It validates moving promising therapies earlier in the treatment process before kids relapse. This is a big step in the right direction and illustrates the impact nonprofit collaboration can have with a shared common goal.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer, in partnership with Solving Kids’ Cancer UK, Band of Parents, The Catherine Elizabeth Blair Foundation, Children’s Neuroblastoma Cancer Foundation, The Evan Foundation, Ronan Thompson Foundation, and Wade’s Army also supported sites in London and Paris to give more children access to this important clinical trial.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           CONTACT:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
             Kristi McKay
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
                       Solving Kids’ Cancer
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
                       kristi@solvingkidscancer.org
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
                       212-588-6624
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ###
          &#xD;
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           About Solving Kids’ Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer (SKC) is not just our name, it’s our mission. SKC focuses on improving survival rates for the most aggressive childhood cancers by advancing clinical trials of next-generation treatments and using advocacy to improve uptake of currently available discoveries in a collaborative approach that addresses today’s unmet needs, because every kid deserves to grow up. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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      <pubDate>Mon, 03 Apr 2023 11:16:10 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/collaborative-effort-of-nonprofits-yields-big-results-for-treating-high-risk-neuroblastoma</guid>
      <g-custom:tags type="string" />
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    <item>
      <title>What You Should Know About Cancer Vaccines – 2023</title>
      <link>https://www.solvingkidscancer.org/blog/cancer-vaccines</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Most of us are familiar with vaccines, a type of 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/combining-decitabine-vaccine-therapy/" target="_blank"&gt;&#xD;
      
           immunotherapy
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            given to healthy people to prevent common diseases. They are made from a weakened virus or attenuated bacteria that causes the disease and are introduced into the body. This helps build antibodies that recognize and fight off that particular disease more effectively.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Some cancer vaccines work in the same way, protecting the body from the virus that can cause cancer. As a preventative, this type of cancer vaccine will only work if the person gets the vaccine before they get the virus. But there are also cancer vaccines that are used to treat certain forms of cancer. These vaccines for cancer treatment are given to people who already have cancer, and help stop the disease from spreading or returning.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Here’s what you should know about cancer vaccines and how this promising field of immunotherapy can help improve outcomes for pediatric cancer patients: 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Vaccines to Prevent Cancer
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           Some viruses can cause cancer. Vaccines that prevent cancer work by helping the body’s white blood cells attack the virus when it enters the body. It does this by using the white blood cells’ proteins, called receptors, that are located on its surface. Viruses also have proteins on their surface, which are called antigens. Receptors and antigens are unique to each white blood cell and virus. When a white blood cell finds a virus’ antigens that “fits” to its receptors, the white blood cell binds to it and destroys the virus.1 
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           Sometimes, the body doesn’t have the white blood cells with the right receptors to fight a virus, so vaccines that prevent cancer work by training the white blood cells to recognize the virus and fight it.
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            ﻿
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-89-768x538.png" alt="A yellow cell is surrounded by blue cells on a green surface."/&gt;&#xD;
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           Currently, there are two cancer prevention vaccines approved by the U.S. Food and Drug Administration (FDA) and recommended by the U.S. Centers for Disease Control and Prevention (CDC): the human papillomavirus (HPV) vaccine and the Hepatitis B vaccine, which was the first cancer vaccine ever created.
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           Vaccines To Treat Cancer
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           Unlike vaccines to prevent cancer, vaccines for cancer treatment are given to people who already have cancer. The vaccine helps the immune system find, bind and destroy the cancer cells making the body sick. It’s also used to keep the cancer cells from spreading and returning.
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           Currently, the FDA has only approved 3 vaccines for cancer treatment in the U.S: BCG, Sipuleucel-T, and Talimogene laherparepvec or T-VEC.5
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           BCG Vaccine
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           Approved by the FDA in 1990, the BCG vaccine can be used to treat some forms of bladder cancer in its early stages, before the cancer has spread to other parts of the body. It can also be given after cancer treatment to keep the cancer from returning. To deliver the drug, doctors administer the BCG vaccine in liquid form through a catheter, allowing it to come into direct contact with the cancer cells. 
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           Sipuleucel-T Vaccine
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           Used to treat metastatic prostate cancer, Sipuleucel-T was approved by the FDA in 2010. The drug is personalized to the patient’s immune cells. Using a machine, the patient’s blood is collected, which extracts the immune cells and returns the rest of the blood back into the body. Afterwards, the collected cells are sent to a manufacturing lab, where the patient’s immune cells are mixed with proteins that make them work against the cancer.
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           T-VEC Vaccine
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           Made with a genetically modified and live herpesvirus, this vaccine was approved by the FDA in 2015 to treat advanced melanoma. T-VEC is injected directly into the tumors in the skin and lymph nodes. The drug works by creating copies of itself in cancer cells, causing the cancer cells to burst. 
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           Vaccines and Pediatric Cancer
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           Researchers around the globe are exploring different ways cancer vaccines work and testing to see which types of cancers vaccines can treat. Historically, the majority of vaccination studies have been applied to adults, so there’s still a lot that scientists don’t know about vaccines and the potential effectiveness against pediatric cancer. As a form of immunotherapy for kids, cancer vaccines are being studied in ongoing 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
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           . 
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           Here are the four different classes of cancer vaccines 6 and their current applications in childhood cancer studies:
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           Cell-Based Vaccines
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           Cell-based vaccines can include the use of whole tumor cells, tumor antigens, or dendritic cells (DCs) already present in the patient’s body to train the immune system to find and attack abnormal cells, like cancer cells. The job of dendritic cells present tumor antigens to the immune system, triggering an immune response. To make this vaccine, scientists modify a patient’s dendritic cells to create tumor-specific antigens that target the cancer cells inside the patient. 
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
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           In some phase I/II clinical trials with pediatric cancer patients, DC cancer vaccines have been shown to cause minimal toxicity. Solving Kids’ Cancer has helped fund a dendritic cell vaccine for neuroblastoma, which showed promising results in the patient population.7 Several studies using this vaccine have also reported improved outcomes for patients with various types of cancers, including relapsed sarcomas, acute myeloid leukemia, and relapsed malignant 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/pediatric-brain-tumors-and-our-impact/" target="_blank"&gt;&#xD;
      
           brain tumors
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           .8
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           One trial used a vaccine containing the tumor antigens, synthetic GD2 and GD3, and tested it with a combination of immune adjuvants beta glucan (β-glucan) and OPT-81, resulting in encouraging outcomes. Adjuvants are substances that are added to a vaccine to help boost the immune system’s response to antigens. To date, hundreds of children have been treated with this vaccine.9 It’s currently being tested for added immune response with or without a protein called granulocyte-macrophage colony stimulating factor (GM-CSF), which is a substance that helps to make more white blood cells. 
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           Peptide Vaccines
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           Made from special proteins in cancer cells, this vaccine stimulates the immune system to produce antibodies against a particular disease. Since peptide vaccines are formed from proteins extracted from a pathogen, they don’t have to be grown in a lab unlike traditional vaccines. Instead, they can be produced quickly, in large quantities, and at lower costs using automated equipment.
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  &lt;p&gt;&#xD;
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           When used in pediatric clinical trials for solid and hematological cancers, peptide vaccines resulted in complete remission in one patient and a period of stable disease in another patient within a limited patient population, though a larger study with 26 patients didn’t demonstrate a clinical response.10 There have also been some improvements in pediatric cancer patients with 
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    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           high-risk neuroblastoma
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            and gliomas.8 
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           Nucleic Acid Vaccines
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           Nucleic acid cancer vaccines are made from small amounts of DNA and RNA that are usually found in cancer cells. When a patient is given the vaccine, their cells will develop proteins that recognize the cancer cells inside their body as a foreign substance, triggering the immune system to create antibodies that will destroy them. Like peptide vaccines, nucleic vaccines can be produced rapidly and at lower costs.
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           Though there have been minimal studies of nucleic acid vaccines used on pediatric cancers, they have been shown to produce T-cell immunity, training the immune system’s T-cells to recognize and kill cancer cells present in the body.8 
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           Viral Vector Vaccines
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           Viral vector vaccines use a modified version of the virus to give instructions to the body’s cells. This causes the cells to produce antigens, triggering an immune response. If the body is exposed to the virus later, its cells will recognize and know how to fight the virus.
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           Currently, there is minimal evidence on viral vector vaccines for use in pediatric cancers. However, some preclinical data suggests that viral vectors may be effective on brain tumors. Additionally, a study using a designed human cytomegalovirus (HCMV)-based vaccine has shown to efficiently stimulate T-cells, while a phase I study using adenoviral vector with the herpes virus has shown to be safe in combination with radiation and chemotherapy when treating pediatric malignant glioma or recurrent ependymoma.8
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           Future of Vaccines for Childhood Cancer
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  &lt;p&gt;&#xD;
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           As scientists continue to learn how to harness the power of the immune system through immunotherapy, there is hope that cancer vaccines can impact outcomes for pediatric cancer patients. Though many of the studies on pediatric cancer vaccines are still in early stages, major advances shown in preclinical data and 
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    &lt;a href="https://clinicaltrials.gov/ct2/show/NCT04837547" target="_blank"&gt;&#xD;
      
           clinical trials
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            could lead to more effective, less toxic treatments for patients and fewer 
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           long-term health issues for survivors
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           . 
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           As the landscape of pediatric cancer treatment evolves with the introduction of immunotherapy and vaccine development, it is essential to remain vigilant about the potential for vaccine injury. While the promise of cancer vaccines brings hope, it also raises important questions regarding safety and long-term effects, especially in vulnerable populations like children.
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           The emergence of cases linked to vaccine injuries can be concerning for families who are already navigating the complexities of cancer treatment. This is where resources like 
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    &lt;a href="https://www.myvaccinelawyer.com/" target="_blank"&gt;&#xD;
      
           My Vaccine Lawyer
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            become invaluable, providing guidance and support for families facing the challenges of vaccine-related complications. Their expertise helps individuals understand their rights and the options available should they experience adverse reactions.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The delicate balance between harnessing the immune system’s power through innovative treatments and ensuring patient safety is a priority for researchers and healthcare providers alike. Ongoing dialogue about the benefits and risks associated with cancer vaccines is crucial, particularly in pediatric oncology, where the stakes are high.
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           As studies progress and more data emerges, it will be vital for families to have access to comprehensive information and legal resources. This will enable them to make informed decisions about their children’s health while advocating for their rights in the event of vaccine injuries.
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  &lt;p&gt;&#xD;
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           At Solving Kids’ Cancer, we believe in driving innovation forward to accelerate new, next-generation treatments, like pediatric cancer vaccines. By 
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           collaborating with researchers
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            and institutions across the globe, we’re working hard to find and fund breakthrough trials for the rarest and most aggressive childhood cancers. Your support helps fund clinical trials to discover cures for childhood cancer and give more hope to children and families — 
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           because every kid deserves to grow up.
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  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_cancer_vaccine&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_cancer_vaccine&amp;amp;utm_medium=blog&amp;amp;utm_content=cancer_vaccine_blog" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-3-768x192+%281%29.png" alt="A pink button that says `` help solve kids ' cancer ''."/&gt;&#xD;
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           Sources: 
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 What Are Cancer Vaccines? – 
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    &lt;a href="https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines" target="_blank"&gt;&#xD;
      
           https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines
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           2 HPV Vaccine Facts – 
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    &lt;a href="https://www.cancer.org/healthy/cancer-causes/infectious-agents/hpv/hpv-vaccine-facts-and-fears.html" target="_blank"&gt;&#xD;
      
           https://www.cancer.org/healthy/cancer-causes/infectious-agents/hpv/hpv-vaccine-facts-and-fears.html
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           3 HPV Vaccination Recommendations – 
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    &lt;a href="https://www.cdc.gov/vaccines/vpd/hpv/hcp/recommendations.html" target="_blank"&gt;&#xD;
      
           https://www.cdc.gov/vaccines/vpd/hpv/hcp/recommendations.html
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           4 Hepatitis B Are You At Risk? – 
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    &lt;a href="https://www.cdc.gov/hepatitis/hbv/pdfs/hepbatrisk.pdf" target="_blank"&gt;&#xD;
      
           https://www.cdc.gov/hepatitis/hbv/pdfs/hepbatrisk.pdf
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Cancer Vaccines – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361626/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6361626/
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    &lt;/a&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           6 Cancer vaccines as promising immuno-therapeutics: platforms and current progress – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://jhoonline.biomedcentral.com/articles/10.1186/s13045-022-01247-x#:~" target="_blank"&gt;&#xD;
      
           https://jhoonline.biomedcentral.com/articles/10.1186/s13045-022-01247-x#:~
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           7 A phase I trial combining decitabine/dendritic cell vaccine targeting MAGE-A1, MAGE-A3 and NY-ESO-1 for children with relapsed or therapy-refractory neuroblastoma and sarcoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/26105625/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/26105625/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           8 Therapeutic cancer vaccines for pediatric malignancies: advances, challenges, and emerging technologies – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8034661/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8034661/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           9 A Study of a Vaccine in Combination With β-glucan and GM-CSF in People With Neuroblastoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5592799/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5592799/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           10 WT1 peptide immunotherapy for cancer in children and young adults – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/20582983/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/20582983/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
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      <pubDate>Tue, 28 Mar 2023 13:49:02 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/cancer-vaccines</guid>
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    <item>
      <title>5 Things to Know About Rare Disease Week</title>
      <link>https://www.solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Rare Disease Week is an awareness event set aside to generate lasting change for the rare disease community. It takes place every year — starting on the last day of February — the month with the rarest number of days, to emphasize the nature of these conditions and direct attention to rare diseases as a public health concern that can impact anyone.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Here are 5 things to know about 
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           Rare Disease Week:
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
              
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    &lt;a href="https://solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week/#anchor1" target="_blank"&gt;&#xD;
      
           1. The word “rare” in “rare diseases” is misleading
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    &lt;span&gt;&#xD;
      
              
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    &lt;a href="https://solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week/#anchor2" target="_blank"&gt;&#xD;
      
           2. Rare diseases pose multiple challenges
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      &lt;br/&gt;&#xD;
      
              
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    &lt;a href="https://solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week/#anchor3" target="_blank"&gt;&#xD;
      
           3. Childhood cancers are considered rare diseases
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      &lt;br/&gt;&#xD;
      
              
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    &lt;a href="https://solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week/#anchor4" target="_blank"&gt;&#xD;
      
           4. Solving Kids’ Cancer prioritizes rare childhood cancers
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      &lt;br/&gt;&#xD;
      
              
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    &lt;a href="https://solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week/#anchor5" target="_blank"&gt;&#xD;
      
           5. Anyone can help make a difference for kids with rare diseases
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    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
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      &lt;/span&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           1. The Word “Rare” in Rare Diseases is Misleading
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    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When it comes to diseases, the word “rare” in “rare diseases” can be misleading. Rare diseases are defined differently in different parts of the world. In Europe, a disease is considered rare when it affects fewer than 1 in 2,000 people1, while the standard is less than 200,000 people in the United States.2 
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But, in fact, 1 in 10 people (about 30 million) in the United States have a rare disease — about half of those affected by rare diseases are children.3 Worldwide, people with rare diseases make up between than 3.5 – 5.9% of the population.4 But with more than 7,000 rare diseases having been identified so far, they affect about 300 million people in the world5 — that’s nearly the population of the United States. 
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           2. Rare Diseases Pose Multiple Challenges
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&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-85-768x538.png" alt="The word rare is written on wooden blocks on a table."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Currently, about 95% of rare diseases have no FDA approved therapies.6 This is due to the scarcity of clinical research on rare diseases. Since each individual rare disease affects such a small patient population, many research companies don’t develop treatments for them. Fortunately, the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/orphan-drugs/" target="_blank"&gt;&#xD;
      
           Orphan Drug Act of 1983
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    &lt;span&gt;&#xD;
      
            has helped push for new drug development for rare diseases, resulting in over 5,000 orphan drugs for some of these disorders.7
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Still, there remain many challenges for rare disease patients. The notion of these conditions being rare means that rare disease communities, experts and industry professionals are fewer in number and geographically scattered. As such, there is not much scientific collaboration, resulting in limited knowledge about the diseases and best courses of treatment. 
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Additionally, many rare diseases are highly disabling. Aside from limiting life expectancy, rare diseases can often cause serious impairments, significantly reducing quality of life for patients and their families. 
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           3. Childhood Cancers Are Considered Rare Diseases
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           According to the National Cancer Institute, most cancers are considered rare because they occur in fewer than 15 out of 100,000 people each year.8 In fact, all forms of childhood cancers are categorized as rare diseases.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Yet in the United States, more children die of cancer than any other disease. On average, about 14% of children die within 5 years of diagnosis. Among those children who survive, 18% of them will die over the next 25 years.9 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This applies to childhood cancers as a whole, and not any specific rare cancer type. The fact is, that while some childhood cancer treatment may work for most patients, other types of aggressive cancers leave no survivors.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For ultra rare childhood cancers, the challenge is even greater. The rarest childhood cancers make up fewer than 1 in 30 of all pediatric cancers,10 which means they are not commonly encountered in day to day practice. Many are often hard to diagnose because they require more highly specialized tests than some of the more common types of cancer, such as genetic sequencing. Currently, there are no standards of care or clinical trials for many of these cancers.
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    &lt;span&gt;&#xD;
      
            
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           4. Solving Kids’ Cancer Prioritizes Rare Childhood Cancers
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every year, only 4% of federal funding is allocated toward studying pediatric cancers. One of the main reasons life-saving childhood cancer research is consistently underfunded is because childhood cancer is considered rare — accounting for 1% of cancers diagnosed in the United States. Yet, statistically, that percentage equates to about 47 children diagnosed with cancer each day.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we believe no disease is too rare, so we work hard to identify current unmet needs and help 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/skc-funded-projects/" target="_blank"&gt;&#xD;
      
           fund breakthrough trials
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            that accelerate next-generation cancer treatments and cures for the rarest and most aggressive childhood cancers. 
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           More recently, we have pushed forward innovative preclinical research and early-phase clinical trials focusing on 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/pediatric-brain-tumors-and-our-impact/" target="_blank"&gt;&#xD;
      
           brain tumors
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , a rare cancer type that’s the leading cause of death among pediatric cancer patients. Many are terminal upon diagnosis.
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  &lt;p&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Solving Kids’ Cancer is working to change that reality. 
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  &lt;p&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Here are just some of the ways SKC’s funding and leadership have led to innovative approaches in research and treatment of rare pediatric cancers with some focusing on 
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    &lt;a href="https://solvingkidscancer.org/blog/comparing-atrt-dipg-and-etmr-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           rare brain tumors
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           :
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
             • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol/" target="_blank"&gt;&#xD;
      
           First frontline treatment for children diagnosed with ETMR
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    &lt;span&gt;&#xD;
      
            cancer, a very deadly and rare pediatric tumor
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
             • Testing a 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/latest-in-car-t-cell-therapy/" target="_blank"&gt;&#xD;
      
           new CAR-T cell therapy specifically targeting ETMR and medulloblastoma
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    &lt;span&gt;&#xD;
      
            cancer cells 
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
             • First time 
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    &lt;a href="https://solvingkidscancer.org/blog/nivolumab-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           testing the safety of an immunotherapy cancer drug, nivolumab
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           , in children with recurrent brain tumors
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
             • Studying the 
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    &lt;a href="https://solvingkidscancer.org/blog/first-in-class-immunotherapy-for-relapsed-and-refractory-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           use of APX005M, an immune-activating agent, in pediatric patients
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    &lt;span&gt;&#xD;
      
            with recurrent or refractory brain tumors
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    &lt;span&gt;&#xD;
      
             • 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/advancing-dipg-cancer-research/" target="_blank"&gt;&#xD;
      
           Innovative delivery of a drug
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    &lt;span&gt;&#xD;
      
            directly to a brain stem tumor site for patients with diffuse intrinsic pontine glioma (DIPG)
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           All of this exciting progress wouldn’t have been possible without the support of Solving Kids’ Cancer’s families, donors and fundraisers.
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           5. Anyone Can Make a Difference for Kids with Rare Diseases
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Funding for childhood cancer research, especially for rare childhood cancers like brain tumors, gives kids more opportunities to live longer, healthier lives. When you create a fundraiser, you help increase awareness for rare diseases and make new treatments and cures possible — 
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    &lt;strong&gt;&#xD;
      
           because every child deserves to grow up.
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc?rbref=diy_230227_blog_&amp;amp;utm_campaign=diy&amp;amp;utm_source=diy_230227_blog_&amp;amp;utm_medium=blog&amp;amp;utm_content=rare_disease_week_blog" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-2-768x192.png" alt="A pink button that says `` create a fundraiser '' on it."/&gt;&#xD;
  &lt;/a&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources: 
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    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 EU Research on Rare Diseases – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://research-and-innovation.ec.europa.eu/research-area/health/rare-diseases_en#" target="_blank"&gt;&#xD;
      
           https://research-and-innovation.ec.europa.eu/research-area/health/rare-diseases_en#
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 March: Rare Disease Day – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://bmcrheumatol.biomedcentral.com/bmc-series-focus-issue-rare-diseases" target="_blank"&gt;&#xD;
      
           https://bmcrheumatol.biomedcentral.com/bmc-series-focus-issue-rare-diseases
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 Rare Disease Day – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.rarediseaseday.org/what-is-a-rare-disease/" target="_blank"&gt;&#xD;
      
           https://www.rarediseaseday.org/what-is-a-rare-disease/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4 Study Estimates More Than 300 Million with Rare Disease Worldwide, but Number Likely Higher – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://globalgenes.org/raredaily/study-estimates-more-than-300-million-with-rare-disease-worldwide-but-number-likely-higher/" target="_blank"&gt;&#xD;
      
           https://globalgenes.org/raredaily/study-estimates-more-than-300-million-with-rare-disease-worldwide-but-number-likely-higher/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Rare Disease Day 2023: ‘A Day to Be Heard’ – 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://rarediseases.org/rare-disease-day-2023-a-day-to-be-heard/" target="_blank"&gt;&#xD;
      
           https://rarediseases.org/rare-disease-day-2023-a-day-to-be-heard/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           6 For Rare Disease Patients, A Pathway to Hundreds of New Therapies – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.healthaffairs.org/do/10.1377/forefront.20170321.059289/" target="_blank"&gt;&#xD;
      
           https://www.healthaffairs.org/do/10.1377/forefront.20170321.059289/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           7 Using four decades of FDA orphan drug designations to describe trends in rare disease drug development: substantial growth seen in development of drugs for rare oncologic, neurologic, and pediatric-onset diseases – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01901-6" target="_blank"&gt;&#xD;
      
           https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01901-6
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           8 National Cancer Institute – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.cancer.gov/publications/dictionaries/cancer-terms/def/rare-cancer" target="_blank"&gt;&#xD;
      
           https://www.cancer.gov/publications/dictionaries/cancer-terms/def/rare-cancer
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           9 Childhood Cancer Facts – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.childrenscancercause.org/facts" target="_blank"&gt;&#xD;
      
           https://www.childrenscancercause.org/facts
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           10 Rare Tumours – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-children/rare-tumours" target="_blank"&gt;&#xD;
      
           https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-children/rare-tumours
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
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      <pubDate>Fri, 24 Feb 2023 08:43:41 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/5-things-to-know-about-rare-disease-week</guid>
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    </item>
    <item>
      <title>The Latest in CAR-T Cell Therapy for Pediatric Cancer</title>
      <link>https://www.solvingkidscancer.org/blog/latest-in-car-t-cell-therapy</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Although significant strides have been made in the treatment of children with cancer over the years, survival for some cancers, such as solid tumors, and rare, aggressive cancers, have seen little improvement. Those who do survive pediatric cancers, are often faced with 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           long-term health complications
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            from the current standard of care treatments of chemotherapy, surgery and radiation therapy.1 For children who relapse, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/role-impact/" target="_blank"&gt;&#xD;
      
           survival rate for some cancers is unacceptably low
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    &lt;span&gt;&#xD;
      
            – near 0% – with few second-line treatments available.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But, a promising new cancer treatment that harnesses the power of the immune system may be a game changer.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Chimeric antigen receptor (CAR) T cell therapy is a way of taking the body’s own immune cells, which fight infection, and reprogramming them in a lab to find and kill cancer cells. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Today, CAR-T cell therapy is approved and being used in pediatric oncology for children as well as adolescents and young adults (AYA) with blood cancers, such as lymphoma and certain types of leukemia, often resulting in full remission.2 Researchers are currently working on extending this therapy to improve outcomes for many high-risk pediatric solid tumors.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           How Does CAR-T Cell Therapy Work?
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    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Shutterstock_CART-cellTherapy-768x689.png" alt="A diagram showing the process of car-t cell therapy"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           CAR-T cell therapy is a type of 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/combining-decitabine-vaccine-therapy/" target="_blank"&gt;&#xD;
      
           immunotherapy
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            using cutting-edge cell engineering to enable the body’s own immune system to heal itself. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The process begins with removing types of white blood cells, called T cells, from the patient’s blood. T cells kill diseased cells by using the protein receptors on their surface to latch onto antigens, which are protein fragments found on the surface of all cells. When a T cell latches onto an abnormal cell, it turns “on” and destroys that cell while minimizing damage to surrounding healthy cells.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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           But, cancerous cells often look like normal cells. To combat their deception, scientists use CAR-T cell therapy, to attack specific cancer cells by inserting instructions in the patient’s T cells to recognize and latch onto the diseased cell. 
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           Once reprogrammed, the T cells have special receptors called chimeric antigen receptors (CARs) on their surface. Then, these newly engineered CAR-T cells are grown to multiply in a lab. Afterwards, millions of them are returned into the patient’s bloodstream, where the new receptors allow CAR-T cells to seek out and latch on to a specific antigen on the patient’s tumor cells and destroy them.3
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            ﻿
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    &lt;strong&gt;&#xD;
      
           Recent Breakthroughs in CAR-T Cell Treatment
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Over ten years ago, 6-year-old Emily Whitehead became the first pediatric patient to receive CAR-T cell therapy.5 The treatment was an unprecedented success: the CAR-T cells completely eradicated her acute lymphoblastic leukemia and put her into full remission. 
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           Five years after Emily was treated, the U.S. Food and Drug Administration (FDA) approved the CAR-T cell therapy product used to treat Emily, ushering in a new era in the treatment of cancer. Since then, a total of six CAR-T cell therapies were also approved. 
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    &lt;span&gt;&#xD;
      
           With every patient treated using this novel therapy for cancer, along with continued innovation in CAR-T cell design, exciting new developments in CAR-T cell treatments are leading to more hope for pediatric cancer patients and their families.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Here are the latest breakthroughs showing how CAR-T cells are paving the way to become the next great advancement in cancer treatment:
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            ﻿
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           Continuing Impressive Results from New Cancer Treatment for Blood Cancers
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           CAR-T cell therapy has resulted in continuing remarkable success for some pediatric blood cancers, such as lymphoma, certain types of leukemia, and most recently, multiple myeloma (MM), the second most common type of blood cancer in the United States. CAR-T cell therapy has shown extraordinary responses with refractory MM. Continuing research is underway to further improve patient outcomes.6
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    &lt;strong&gt;&#xD;
      
           Earlier CAR-T Cell Therapy Produces More Effective Results
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    &lt;span&gt;&#xD;
      
           Recent, large clinical trials have shown that after initial chemotherapy, CAR-T cell therapy may be more effective than current conventional treatments. With ongoing trials proving similar positive outcomes, researchers have noted that these dramatic results could signal a change in the future with CAR-T cells being used earlier in the course of the disease, which means it could become a frontline treatment for many more types of cancers soon.7
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           CAR-T Cell Treatment Results in Solid Tumors Are Improving
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    &lt;span&gt;&#xD;
      
           Solid tumors like 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/comparing-atrt-dipg-and-etmr-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           diffuse intrinsic pontine glioma (DIPG) tumors
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    &lt;span&gt;&#xD;
      
            are extremely difficult to treat due to its aggressive nature and location in the brain. While CAR-T cell treatment results in solid tumors are limited, progress is improving and heading in the right direction. 
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    &lt;span&gt;&#xD;
      
           The latest developments include the first patient infused directly with CAR-T cells into the brain to treat DIPG, which resulted in both proving the treatment was tolerable and that it inhibited growth of the cancer cells for a period of time.8 
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           Also, a 
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    &lt;a href="https://solvingkidscancer.org/blog/advancing-dipg-cancer-research/" target="_blank"&gt;&#xD;
      
           recent collaboration of using GD-2
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            (a sugar molecule found on the surface of DIPG tumors) with CAR-T cell therapies in neuroblastoma and central nervous system gliomas have shown promising results in several clinical trials with dramatic reduction in size of DIPG tumors and improvement in symptoms.
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           CAR-T Cell Treatment of Relapsed or Refractory Cancers Is Underway
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    &lt;span&gt;&#xD;
      
           In 2020, the FDA approved the first CAR-T cell treatment for relapsed and refractory cancer. Some cases of these groups of clinical trials resulted in CAR-T cell therapy being so effective that they didn’t require further types of treatments.9 CAR-T cells as first- or second-line of treatment could significantly transform the treatment picture for relapsed or refractory cancers that conventional therapies initially fail to cure.10
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Solving Kids’ Cancer’s Role in Advancing Research in Pediatric Cancer Treatment
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  &lt;p&gt;&#xD;
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           Over a decade since receiving CAR-T cell therapy, Emily Whitehead is now a bright 17-year-old applying for college. Her 10-year survival shows the incredible progress of this new cancer treatment and the long-term hope it offers. Although there is still much work to be done, CAR-T cells have been a lifesaving treatment to many, like Emily, who only a few years ago would have succumbed to their disease. 
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           At Solving Kids’ Cancer, we believe the cures are in the science. That’s why we’re committed to funding breakthrough research and clinical trials to find cures for children with the deadliest childhood cancers. 
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           Over the past decade, we have funded 
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    &lt;a href="https://solvingkidscancer.org/skc-funded-projects/" target="_blank"&gt;&#xD;
      
           three DIPG cancer-specific clinical trials and eight additional trials
          &#xD;
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            that included the study of DIPG and other types of pediatric brain tumors. Additionally, one of our more recent landmark pediatric research projects involves testing a 
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    &lt;a href="https://solvingkidscancer.org/blog/2022-year-in-review/" target="_blank"&gt;&#xD;
      
           new CAR-T cell therapy specifically targeting ETMR and medulloblastoma cancer cells
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           . 
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           Help us raise awareness and funding to give more kids a second chance at life — 
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    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up.
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&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc?rbref=diy_230210_blog_&amp;amp;utm_campaign=diy&amp;amp;utm_source=diy_230210_blog_&amp;amp;utm_medium=blog&amp;amp;utm_content=cart_cell_blog" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-2-768x192.png" alt="A pink button that says `` create a fundraiser '' on it."/&gt;&#xD;
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
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    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Childhood Cancer Fact Library 
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    &lt;a href="https://cac2.org/interest-groups/awareness/childhood-cancer-fact-library/" target="_blank"&gt;&#xD;
      
           https://cac2.org/interest-groups/awareness/childhood-cancer-fact-library/
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           2 Study Shows CAR T-Cell Therapy Is Effective at Putting Childhood Leukemia Into Remission
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    &lt;a href="https://www.cancer.net/blog/2022-12/study-shows-car-t-cell-therapy-effective-putting-childhood-leukemia-remission#:~:text=Leukemia%20Into%20Remission-,Study%20Shows%20CAR%20T%2DCell%20Therapy%20Is%20Effective,Putting%20Childhood%20Leukemia%20Into%20Remission&amp;amp;text=Results%20from%20a%20recent%20study,children%20with%20high%2Drisk%20disease." target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://www.cancer.net/blog/2022-12/study-shows-car-t-cell-therapy-effective-putting-childhood-leukemia-remission#:~:text=Leukemia%20Into%20Remission-,Study%20Shows%20CAR%20T%2DCell%20Therapy%20Is%20Effective,Putting%20Childhood%20Leukemia%20Into%20Remission&amp;amp;text=Results%20from%20a%20recent%20study,children%20with%20high%2Drisk%20disease.
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 CAR T-cell Therapy and Its Side Effects 
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    &lt;a href="https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy/car-t-cell1.html" target="_blank"&gt;&#xD;
      
           https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy/car-t-cell1.html
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    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4 First-Ever CAR T-cell Therapy Approved in U.S. 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://aacrjournals.org/cancerdiscovery/article/7/10/OF1/6073/First-Ever-CAR-T-cell-Therapy-Approved-in-U-S" target="_blank"&gt;&#xD;
      
           https://aacrjournals.org/cancerdiscovery/article/7/10/OF1/6073/First-Ever-CAR-T-cell-Therapy-Approved-in-U-S
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    &lt;/a&gt;&#xD;
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Emily Whitehead, First Pediatric Patient to Receive CAR T-Cell Therapy, Celebrates Cure 10 Years Later 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.chop.edu/news/emily-whitehead-first-pediatric-patient-receive-car-t-cell-therapy-celebrates-cure-10-years#:~:text=Search-,Emily%20Whitehead%2C%20First%20Pediatric%20Patient%20to%20Receive%20CAR%20T%2DCell,Celebrates%20Cure%2010%20Years%20Later" target="_blank"&gt;&#xD;
      
           https://www.chop.edu/news/emily-whitehead-first-pediatric-patient-receive-car-t-cell-therapy-celebrates-cure-10-years#:~:text=Search-,Emily%20Whitehead%2C%20First%20Pediatric%20Patient%20to%20Receive%20CAR%20T%2DCell,Celebrates%20Cure%2010%20Years%20Later
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    &lt;/a&gt;&#xD;
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           6 CAR T-Cell Therapy for Patients with Multiple Myeloma: Current Evidence and Challenges 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9439649/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9439649/
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  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           7 Should CAR T Cells Be Used Earlier in People with Non-Hodgkin Lymphoma? 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.cancer.gov/news-events/cancer-currents-blog/2022/nhl-car-t-cells-belinda-transform-zuma7" target="_blank"&gt;&#xD;
      
           https://www.cancer.gov/news-events/cancer-currents-blog/2022/nhl-car-t-cells-belinda-transform-zuma7
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    &lt;/a&gt;&#xD;
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           8 Could CAR-T-cell therapy offer hope to children with cancer? 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.nature.com/articles/d41586-022-04344-6" target="_blank"&gt;&#xD;
      
           https://www.nature.com/articles/d41586-022-04344-6
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    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           9 CAR T-cell therapy boosts cure rates for children with aggressive blood cancer 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://connect.uclahealth.org/2022/11/03/car-t-cell-therapy-boosts-cure-rates-for-children-with-aggressive-blood-cancer/" target="_blank"&gt;&#xD;
      
           https://connect.uclahealth.org/2022/11/03/car-t-cell-therapy-boosts-cure-rates-for-children-with-aggressive-blood-cancer/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           10 Paediatric Strategy Forum for medicinal product development of chimeric antigen receptor T-cells in children and adolescents with cancer: ACCELERATE in collaboration with the European Medicines Agency with participation of the Food and Drug Administration
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/34840026/" target="_blank"&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/34840026/
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      <pubDate>Thu, 09 Feb 2023 08:21:39 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/latest-in-car-t-cell-therapy</guid>
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      <title>Nanotechnology and the Future of Childhood Cancer Treatments</title>
      <link>https://www.solvingkidscancer.org/blog/nanotechnology</link>
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           Cancer is one of the leading causes of death by disease among children,1 claiming the lives of over 100,000 kids each year worldwide.2 With the development of chemotherapy and other conventional pediatric cancer treatments, there has been a considerable rise in overall survival rates over the last 30 years, but the quality of life for many survivors remains low. 
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           In fact, more than 95% of childhood cancer survivors will have a significant 
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    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           health related issue
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            by the time they are 45 years of age; these health related issues are side effects of either the cancer or more commonly, the result of its treatment.1 
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            ﻿
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           Lasting effects of current therapies limit childhoods, put stress on families and impact health systems. However, an emerging scientific field, called nanotechnology, potentially holds the key to safer, more effective treatments with less side effects and improved quality of life for childhood cancer survivors.
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           What is Nanotechnology?
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           Nanotechnology is an interdisciplinary branch of science, engineering and technology that’s conducted at the nanoscale — meaning it harnesses unique properties of materials at the 1-100 nanometer scale (1 nanometer = one billionth of a meter).
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           Since the processes that develop cancer inside our bodies happen in nanoscale, nanotechnology uses scientifically-engineered nanoparticles — particles 100 to 10,000 times smaller than human cells — to treat diseases at this very tiny level. The nanoparticles’ small size allows it to effectively target the disease. 
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           How Nanotechnology Might Revolutionize Childhood Cancer Treatments
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           Currently, the standard protocols for childhood cancer treatments involve chemotherapy drugs that are highly toxic. Since children’s bodies are growing and changing, cancer and its treatment are more likely to harm them.
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           Because the goal of chemotherapy is to kill fast-growing cancer cells, its treatment involves administering the maximum amount of the drug tolerated throughout the body, rather than targeting a specific area. As a result, it can also damage the patient’s normal cells, leading to long-term health problems for pediatric cancer patients. 
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           Conversely, nanotechnology allows for more precise administration. Nanoparticles can be packaged with drugs and delivered directly where they’re needed. They also don’t release the medicine until they reach the cancerous cell. This allows for higher doses of the drugs to be used in the tumor to kill the cancer, while minimizing risk to the patient’s surrounding healthy tissue.
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  &lt;/p&gt;&#xD;
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Hurdles of Nanotechnology for Pediatric Cancer Treatment 
          &#xD;
    &lt;/strong&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Nanotechnology shows great potential in helping treat childhood cancer more safely and effectively, but there is too little research being done for its use in pediatric oncology. It is currently being applied to deliver some types of chemotherapy to adults, but it has to go through more testing to be able to be used in kids. To date, there haven’t been nanotherapeutic drugs developed specifically for children, because of a variety of hurdles, one of them being that the 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/orphan-drugs/" target="_blank"&gt;&#xD;
      
           pediatric cancer treatment market isn’t as lucrative
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    &lt;span&gt;&#xD;
      
           .
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      &lt;span&gt;&#xD;
        
            ﻿
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           However, a biotech company called PEEL Therapeutics, is currently working on a revolutionary nanotechnology drug that will improve childhood cancer treatment and quality of life for survivors. Surprisingly, the key to that drug has something to do with elephants.
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           Elephants and Cancer Research
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            Did you know? Elephants don’t get cancer. This is what PEEL Therapeutics Co-Founder and CEO, Dr. Joshua Schiffman, MD, discovered with his colleagues when studying elephant genes over 10 years ago. A pediatric hematologist-oncologist, part-time Professor of Pediatrics and Investigator at Huntsman Cancer Institute at the University of Utah and a pediatric cancer survivor himself, Schiffman found that elephants have extra copies of the tumor suppressor p53 gene — a gene that some of his cancer patients had missing. 
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           “We compared the blood of elephants to the blood of our patients and figured out that this elephant p53 was actually doing a tremendous job working even better potentially than human p53 at triggering cell death,” shares Schiffman.
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            ﻿
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           PEEL Therapeutics is currently developing a nanotechnology drug using nanoparticles that deliver elephant cancer fighting proteins for cancer treatment. The company also picked up the SN22 nanoparticle work3 Solving Kids’ Cancer helped fund at Children’s Hospital of Philadelphia. It’s an exciting and fascinating scientific breakthrough that may change the future of childhood cancer treatments for patients, families and survivors.
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            ﻿
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           To learn more about elephants and cancer research, PEEL Therapeutics, and the next steps for nanodrug p53, subscribe to 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           This Week in Pediatric Oncology (TWIPO)
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , Solving Kids’ Cancer’s podcast exploring hot topics and exciting advances in childhood cancer.
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           Subscribe to TWiPO:
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    &lt;a href="https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkLnBvZGJlYW4uY29tL3NvbHZpbmdraWRzY2FuY2VyL2ZlZWQueG1s" target="_blank"&gt;&#xD;
      
           Google Podcasts
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            | 
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    &lt;a href="https://open.spotify.com/show/4F5Uxw2ceHIH8HAxCywsLV" target="_blank"&gt;&#xD;
      
           Spotify
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            | 
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    &lt;a href="https://podcasts.apple.com/us/podcast/this-week-in-pediatric-oncology/id806379467" target="_blank"&gt;&#xD;
      
           Apple Podcasts
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            | 
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           YouTube
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      <pubDate>Fri, 03 Feb 2023 08:16:01 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/nanotechnology</guid>
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      <title>Easy Fundraiser Ideas to Support Childhood Cancer Research</title>
      <link>https://www.solvingkidscancer.org/blog/easy-fundraising-ideas-for-childhood-cancer-awareness</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Create a Fundraiser for Childhood Cancer Research in 2024
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           Every day, 47 children in the United States are diagnosed with cancer, marking it as a leading cause of death among children globally.1 Despite the staggering statistics, childhood cancer research receives only a small portion of federal funding. However, with some easy fundraising ideas and your dedication, we can make strides in offering better, safer treatments for these children. 
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           Solving Kids’ Cancer’s 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc?rbref=diy_230201_blog_&amp;amp;utm_campaign=diy&amp;amp;utm_source=diy_230201_blog_&amp;amp;utm_medium=blog&amp;amp;utm_content=diy_blog_lp" target="_blank"&gt;&#xD;
      
           Create a Fundraiser
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    &lt;span&gt;&#xD;
      
            program empowers you to support children battling cancer by crafting a fundraising event tailored to your interests and passions, accelerating the development of advanced treatments and cures.
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  &lt;p&gt;&#xD;
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           Here’s how you can kick things off with some easy fundraising ideas:
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           Step 1: Create Your Childhood Cancer Fundraiser
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           The first step to making a tangible difference is selecting a type of fundraiser that speaks to you. Whether you’re inspired to 
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           turn your passions into action
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           , 
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           honor a loved one
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           , 
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           celebrate a milestone
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           , or engage in 
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           team fundraising ideas
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           , your unique initiative can mobilize your community.
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           Fresh &amp;amp; Easy Fundraising Ideas for 2024
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/fundraising-icon-150x150.png" alt="A group of people are standing around a dollar sign."/&gt;&#xD;
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           Team Fundraising Ideas
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           Amplify your impact by organizing charity walks, sports tournaments, or group challenges.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/school-icon-150x150.png" alt="A pink school building with a flag on top of it."/&gt;&#xD;
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           School Fundraising Ideas
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           Collaborate with schools on read-a-thons, themed dress days, or talent shows, integrating education on philanthropy.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/mobile-phone-icon-150x150.png" alt="A cell phone with a muscle on the screen."/&gt;&#xD;
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           Virtual Challenges
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           Capitalize on digital platforms for challenges ranging from fitness goals to gaming marathons, expanding your reach.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/workshop-icon-150x150.png" alt="Two people are sitting at a table with speech bubbles."/&gt;&#xD;
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           Interactive Workshops and Classes
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           Leverage your talents by conducting workshops, from baking to crafts, fostering engagement while supporting a vital cause.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/eco-friendly-icon-150x150.png" alt="A pink icon of a globe with an arrow pointing to it."/&gt;&#xD;
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  &lt;p&gt;&#xD;
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           Eco-Friendly Initiatives
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           Align your efforts with environmental values through activities like community clean-ups or tree-planting days, enhancing sustainability alongside childhood cancer research fundraising.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/stream-icon-150x150.png" alt="A pink icon of a wifi signal on a white background."/&gt;&#xD;
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           Streaming for a Cause
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           Harness streaming platforms like YouTube or Twitch for marathon sessions, connecting with a global audience in real time to widen your fundraising outreach.
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           Step 2: Personalize Your Fundraising Page
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           Connecting with potential donors is key, and a personalized fundraising page can help. Share your story or motivation for supporting childhood cancer research to resonate with and inspire potential supporters.
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           Step 3: Ask for Donations
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           While asking for donations might seem challenging, remember: the simple act of asking is powerful. Personal donations, social media campaigns, and heartfelt thanks are all critical strategies to bolster your fundraising success as well as raising childhood cancer awareness.
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           Inspirational Spotlight: Sports Streaming Success
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           As the host of the popular YouTube channel, That’s Good Sports,2 Brandon Perna turned his passion for sports commentary into a powerful fundraising tool, raising over $26,494 for Solving Kids’ Cancer:
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           “I love raising money for SKC because I know every dollar makes a huge impact towards helping one of the worst scenarios any parent can imagine. Once they connected their charity through YouTube, it became incredibly easy for me to create a fundraiser on my channel, and I plan on doing more throughout the year… I can’t think of many things more important than the work they’re doing.”
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           Brandon’s efforts show us just how powerful online platforms can be for childhood cancer research fundraising. Now, it’s simpler than ever to make a significant impact with digital tools
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Brandan-e1713473528125.png" alt="A family posing for a picture in front of a fence with trees in the background."/&gt;&#xD;
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           Create a Fundraiser Today
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Are you ready to make a difference? By joining Solving Kids’ Cancer’s 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc?rbref=diy_230201_blog_&amp;amp;utm_campaign=diy&amp;amp;utm_source=diy_230201_blog_&amp;amp;utm_medium=blog&amp;amp;utm_content=diy_blog_lp" target="_blank"&gt;&#xD;
      
           Create a Fundraiser
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            program, you’re not just contributing to a cause; you’re part of a community striving for a future where every child has the chance to grow up.
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  &lt;a href="https://solvingkidscancer.rallybound.org/donatetoskc?rbref=diy_230201_blog_&amp;amp;utm_campaign=diy&amp;amp;utm_source=diy_230201_blog_&amp;amp;utm_medium=blog&amp;amp;utm_content=diy_blog_lp" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-768x192.png" alt="A pink button that says `` create your fundraiser ''."/&gt;&#xD;
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           Sources: 
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  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Childhood Cancer Fact Library – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/" target="_blank"&gt;&#xD;
      
           https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/
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  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 That’s Good Sports – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.youtube.com/channel/UCew5br5cO1ZKO7Z_F1WA8Bg" target="_blank"&gt;&#xD;
      
           https://www.youtube.com/channel/UCew5br5cO1ZKO7Z_F1WA8Bg
          &#xD;
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  &lt;/h6&gt;&#xD;
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      <pubDate>Mon, 30 Jan 2023 12:30:19 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/easy-fundraising-ideas-for-childhood-cancer-awareness</guid>
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      <title>Leading Women Making a Difference in Childhood Cancer</title>
      <link>https://www.solvingkidscancer.org/blog/leading-women-in-childhood-cancer</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In this week’s episode of
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
            TWiPO (This Week in Pediatric Oncology)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , our cancer podcast dedicated to exploring news and advances in pediatric cancer, hosts Dr. Timothy Cripe and Solving Kids’ Cancer Director of Research Advocacy, Donna Ludwinski, are joined by Ann Graham, Executive Director and Founder of 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.mibagents.org/" target="_blank"&gt;&#xD;
      
           MIB (Make it Better) Agents
          &#xD;
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    &lt;span&gt;&#xD;
      
           , a leading pediatric cancer nonprofit for 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/osteosarcoma-in-children/" target="_blank"&gt;&#xD;
      
           osteosarcoma
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    &lt;span&gt;&#xD;
      
           .
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  &lt;p&gt;&#xD;
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           Graham and her team at MIB Agents, which includes a senior leadership staff made up of women, work with physicians, researchers and patient families to ensure that there is a collaborative effort in advancing osteosarcoma treatments by advocating for research, education and support programs for the osteosarcoma community. 
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Graham is also a 
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    &lt;a href="https://sarctrials.org/sarc-bios/ann-graham/" target="_blank"&gt;&#xD;
      
           SARC (Sarcoma Alliance for Research through Collaboration)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            board member and one of today’s leading women making a difference in childhood cancer. But, how she got involved in the pediatric cancer community in the first place was certainly unusual.
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           An Unexpected Childhood Cancer Diagnosis
          &#xD;
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           It all started with a severe leg pain while training for a marathon. After consulting her sports medicine doctor, who attributed her condition to aging, 43-year-old Graham was sent home and advised to rest her leg more and take it easy on training. But the pain didn’t go away. Though Graham proactively sought answers, she was continuously misdiagnosed. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Nine months later, the pain became so unbearable that Graham couldn’t walk. It wasn’t until she advocated for an MRI that she received an unexpected diagnosis: osteosarcoma, a type of bone cancer that usually affects children, teens and young adults. “I couldn’t even comprehend what was happening,” she says. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Soon after, Graham began treatment at Memorial Sloan Kettering Cancer Center in New York, where she underwent chemotherapy alongside pediatric cancer patients. While she survived with treatment, many kids with the same cancer did not. Determined to make it better for kids fighting cancer, she founded MIB (Make It Better) Agents. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Making It Better for Childhood Cancer Patients
          &#xD;
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Graham began MIB Agents when fellow osteosarcoma patient, 11-year-old Alyssa Divers went into hospice in 2012. Alyssa was a dancer, who faced limb salvage surgery with grace and courage. Graham worked with her family and friends (the first MIB agents) and arranged a three day experience in NYC for Alyssa and her family in her last weeks of life.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “The kids that I was treated with — same kind of thing kept happening. So we kept doing these end-of-life missions. And at some point, I thought, we’ve got to work on this from a different angle,” recounts Graham.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Since then, MIB Agents has spearheaded several patient support programs and educational resources, as well as pioneered 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.mibagents.org/factor23" target="_blank"&gt;&#xD;
      
           FACTOR (Funding – Awareness – Collaboration – Trials – Osteosarcoma Research)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , the first annual osteosarcoma conference. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           FACTOR brings together the world’s leading osteosarcoma researchers, clinicians, and surgeons with patient families to collaborate towards better treatments and discovery of cures in osteosarcoma. Graham states, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           “Not one of us in any of the communities holds the key to unlocking this disease. It’s not one of us. It’s all of us.”
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           The Power of Collaboration in Childhood Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The drive behind creating FACTOR stemmed from Graham’s own experience being an osteosarcoma survivor. “One thing I knew for sure was that being a patient is not a particularly empowering place to be. You feel at the mercy of everybody, everybody’s doing everything for you,” tells Graham.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Graham sought to fix that by creating a symbiotic bridge between the osteosarcoma medical and patient community, empowering patients and families in being able to share their input on childhood cancer research funding. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Since then, FACTOR’s collaborative solutions have helped fast track improvements for osteosarcoma. “We’re now at our fifth conference, and…we’re at the point where we have more 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            for osteosarcoma than we have patients.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Future of Childhood Cancer Research and MIB Agents
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           According to Graham, FACTOR’s success has inspired many leaders in other childhood cancer groups to come to her, seeking to learn how to start their own collaborative conferences. “We’re an open book. If anybody wants to know how to do this, we’re happy to help anybody who is trying to make it better. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           We call it
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           the conspiracy for good.
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As for the future of MIB Agents, Graham shares that she is excited for the development of their
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.mibagents.org/about-us/team#w-tabs-0-data-w-pane-4" target="_blank"&gt;&#xD;
      
            junior advisory board
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , made up of teens and young adults, who run a podcast sharing their perspectives on living with osteosarcoma and AYA (Adolescent &amp;amp; Young Adult) cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           She explains, “Because [osteosarcoma] is a pediatric AYA cancer, it occurred to me at one point, we’ve got to have the input of our constituents, and this is a voice that we don’t hear very often. You don’t hear the patient voice — you hear the parent, you hear the physician, you hear the researcher — we need to hear more from the young adults, and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           they have a lot to say.
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Subscribe to the TWiPO Cancer Podcast Today
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To hear more in-depth details of Graham’s experience as a leading woman in the childhood cancer landscape and an osteosarcoma survivor, her introduction to pediatric cancer advocacy, the beginnings of MIB Agents and its current programs, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           subscribe to TWiPO
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            today. The more we learn and communicate, share ideas and work together, the faster we’ll reach the day when all childhood cancer is curable.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Subscribe to TWiPO:
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkLnBvZGJlYW4uY29tL3NvbHZpbmdraWRzY2FuY2VyL2ZlZWQueG1s" target="_blank"&gt;&#xD;
      
           Google Podcasts
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            | 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://open.spotify.com/show/4F5Uxw2ceHIH8HAxCywsLV" target="_blank"&gt;&#xD;
      
           Spotify
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            | 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://podcasts.apple.com/us/podcast/this-week-in-pediatric-oncology/id806379467" target="_blank"&gt;&#xD;
      
           Apple Podcasts
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            | 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.youtube.com/channel/UC3bpRrPE0uVmjwowkQmanMw" target="_blank"&gt;&#xD;
      
           YouTube
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Ann-Graham-1-scaled-1-768x512.jpeg" length="48513" type="image/jpeg" />
      <pubDate>Mon, 09 Jan 2023 16:41:41 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/leading-women-in-childhood-cancer</guid>
      <g-custom:tags type="string" />
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        <media:description>thumbnail</media:description>
      </media:content>
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      </media:content>
    </item>
    <item>
      <title>A Holiday Message from Our CEO</title>
      <link>https://www.solvingkidscancer.org/blog/a-holiday-message-from-our-ceo</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Dec-blog-top-border-1-2048x236.png" alt="A christmas garland with a red bird and a red bow."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           A Holiday Message from Our CEO on Childhood Cancer Research
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For many, the holiday season is filled with joy, togetherness, and traditions. But for families battling the relentless challenges of pediatric cancer, this time of year can feel different. Instead of focusing on holiday gatherings, these families are navigating hospital visits, treatments, and the uncertainty that comes with a serious diagnosis.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we believe every child deserves a future filled with family traditions and holiday memories. That’s why we’re committed to funding childhood cancer research that targets cancers with the lowest survival rates. By driving groundbreaking studies and treatments, we’re helping children and families impacted by the fight against childhood cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Message from Our Founder: Why We Won’t Stop Fighting
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Power of Our Cancer Community: How You’re Making a Difference
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every year, your generosity fuels stories of hope, healing, and resilience. Here are a few powerful examples of how your childhood cancer donation is impacting lives:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Poppy-dec-blog-300x291.png" alt="A little girl in a yellow dress is sitting on a tree stump"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Poppy’s Journey:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            After years of treatments with little progress, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/poppys-journey/" target="_blank"&gt;&#xD;
      
           a new clinical trial gave Poppy a fighting chance
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Today, she’s in school and thriving, thanks to the support of people like you who believe in the power of childhood cancer research to change lives.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Arden-dec-blog-296x300.png" alt="A little girl in a blue dress is standing on a sandy beach."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Arden’s Holiday Wish:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            This season, Arden’s family celebrates an incredible milestone—four years cancer-free, thanks to a treatment that Solving Kids’ Cancer helped fund. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/ardens-story-of-hope/" target="_blank"&gt;&#xD;
      
           Her story is a powerful reminder of the hope
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            your support brings to families facing pediatric cancer.
           &#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evelyn-dec-blog-294x300.png" alt="A little girl is wearing a pink leotard and white tutu"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Evelyn’s Legacy:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Although Evelyn is no longer with us, her courageous story continues to drive our work. Her memory and her family’s desire to support safer treatments fuel our commitment to discovering cures for other children in need. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate" target="_blank"&gt;&#xD;
      
           Your support in our fight
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to improve outcomes for kids with the most aggressive cancers is critical to our mission.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           These stories, and so many others, show how your support funds new treatments, helps kids reach important milestones, and brings hope to families in our cancer community.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Help Us Bring More Hope to Families
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Help Us Bring More Hope to Families
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            cancer donation goes twice as far in funding research and advancing treatments. This season, help us give kids battling cancer the chance to celebrate another milestone, another holiday, another tomorrow. Every gift brings us closer to the breakthroughs these kids deserve.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Dec-Scott-blog-300x150.png" length="71566" type="image/png" />
      <pubDate>Tue, 20 Dec 2022 21:17:44 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/blog/a-holiday-message-from-our-ceo</guid>
      <g-custom:tags type="string">News &amp; Views</g-custom:tags>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Dec-Scott-blog-300x150.png">
        <media:description>thumbnail</media:description>
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    </item>
    <item>
      <title>Support Childhood Cancer Research This Holiday Season</title>
      <link>https://www.solvingkidscancer.org/blog/holiday-message-childhood-cancer-research</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For many, the holiday season is a joyous time filled with family, friends, celebration, and reflection on the things we’re grateful for. But for families with children battling the most deadly cancers, the holidays can be particularly challenging. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Happy traditions are replaced with navigating a cancer diagnosis and searching for safe treatment options — often while families juggle everything else like jobs and their other children. Michael’s role at one of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://99bitcoins.com/non-gamstop-casinos-uk/" target="_blank"&gt;&#xD;
      
           best casino not on Gamstop
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            sites has provided crucial financial support, helping the family manage medical expenses and maintain some stability during this challenging time.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we believe every kid deserves to grow up, celebrate another holiday, and be with their family. That’s why we’re dedicated to accelerating next-generation treatments and cures for aggressive childhood cancers with low survival rates.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As we enter the season of giving, we ask that you consider giving hope to children with cancer and their families by supporting pediatric cancer research. Here are a few easy ways to make an immediate impact:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-47-768x644.png" alt="A person is giving a gift box to another person."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           1. Create a Facebook Fundraiser
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Use social media for good this holiday season by creating a 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.facebook.com/SolvingKidsCancer/fundraisers" target="_blank"&gt;&#xD;
      
           Facebook fundraiser
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . They’re easy to set up and every donation makes a difference. Once you’ve set up your fundraiser, share it with your friends and family and ask them to make a donation to join you in supporting Solving Kids’ Cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           2. Spread the Word
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Stay up-to-date with our impact on childhood cancer research by following us on 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.facebook.com/SolvingKidsCancer/" target="_blank"&gt;&#xD;
      
           Facebook
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.instagram.com/solvingkidscancer/?hl=en" target="_blank"&gt;&#xD;
      
           Instagram
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://twitter.com/solvekidscancer" target="_blank"&gt;&#xD;
      
           Twitter
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Tag us in posts and rally your network to support pediatric cancer research this holiday season. Here’s a sample post to get you started:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every kid deserves to grow up! This holiday season, join me in supporting @
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           SolvingKidsCancer
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , an organization that’s dedicated to raising awareness and funds for life-saving research for pediatric cancer patients and their families! Together, we can help kids fighting the most deadly cancers. → 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.solvingkidscancer.org/" target="_blank"&gt;&#xD;
      
           solvingkidscancer.org 
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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    &lt;/span&gt;&#xD;
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          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           3. Shop Through Amazon Smile
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Give gifts that give back and support childhood cancer research this holiday season and all year round with 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://smile.amazon.com/" target="_blank"&gt;&#xD;
      
           Amazon Smile
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ! Select Solving Kids’ Cancer as your preferred charity and Amazon will donate 0.5% of the price of your eligible purchases.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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    &lt;/span&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           4. Increase Your Impact with Employer Matching
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Do you want to double — possibly triple — your support of pediatric cancer research? Check with your employer to see if they offer a matching gift program and select Solving Kids’ Cancer as your charity of choice. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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           5. Make a Donation in Honor of a Child With Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Give a donation this holiday season to honor a child with cancer. Every gift helps us get closer to a world where no child will die from cancer and survivors live longer, healthier lives.
           &#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_how_to_support_holiday_22&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_how_to_support_holiday_22&amp;amp;utm_medium=blog&amp;amp;utm_content=year-end_blog" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate.png" alt="A pink donate button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-47-768x644.png" length="854562" type="image/png" />
      <pubDate>Fri, 02 Dec 2022 15:07:57 GMT</pubDate>
      <author>kristi@solvingkidscancer.org (Kristi McKay)</author>
      <guid>https://www.solvingkidscancer.org/blog/holiday-message-childhood-cancer-research</guid>
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      <title>How to Support Solving Kids’ Cancer This Holiday Season</title>
      <link>https://www.solvingkidscancer.org/blog/how-to-support-solving-kids-cancer-this-holiday-season</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           For many, the holiday season is a joyous time filled with family, friends, celebration, and reflection on the things we’re grateful for. But for families with children battling the most deadly cancers, the holidays can be particularly challenging. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Happy traditions are replaced with navigating a cancer diagnosis and searching for safe treatment options — often while families juggle everything else like jobs and their other children. Michael’s role at one of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://99bitcoins.com/non-gamstop-casinos-uk/" target="_blank"&gt;&#xD;
      
           best casino not on Gamstop
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            sites has provided crucial financial support, helping the family manage medical expenses and maintain some stability during this challenging time.
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    &lt;/span&gt;&#xD;
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           At Solving Kids’ Cancer, we believe every kid deserves to grow up, celebrate another holiday, and be with their family. That’s why we’re dedicated to accelerating next-generation treatments and cures for aggressive childhood cancers with low survival rates.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As we enter the season of giving, we ask that you consider giving hope to children with cancer and their families by supporting pediatric cancer research. Here are a few easy ways to make an immediate impact:
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    &lt;/span&gt;&#xD;
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-47-768x644.png" alt="A person is giving a gift box to another person."/&gt;&#xD;
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           1. Create a Facebook Fundraiser
          &#xD;
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    &lt;span&gt;&#xD;
      
           Use social media for good this holiday season by creating a 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.facebook.com/SolvingKidsCancer/fundraisers" target="_blank"&gt;&#xD;
      
           Facebook fundraiser
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . They’re easy to set up and every donation makes a difference. Once you’ve set up your fundraiser, share it with your friends and family and ask them to make a donation to join you in supporting Solving Kids’ Cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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           2. Spread the Word
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Stay up-to-date with our impact on childhood cancer research by following us on 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.facebook.com/SolvingKidsCancer/" target="_blank"&gt;&#xD;
      
           Facebook
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.instagram.com/solvingkidscancer/?hl=en" target="_blank"&gt;&#xD;
      
           Instagram
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://twitter.com/solvekidscancer" target="_blank"&gt;&#xD;
      
           Twitter
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Tag us in posts and rally your network to support pediatric cancer research this holiday season. Here’s a sample post to get you started:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every kid deserves to grow up! This holiday season, join me in supporting @
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           SolvingKidsCancer
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , an organization that’s dedicated to raising awareness and funds for life-saving research for pediatric cancer patients and their families! Together, we can help kids fighting the most deadly cancers. → 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.solvingkidscancer.org/" target="_blank"&gt;&#xD;
      
           solvingkidscancer.org 
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           3. Shop Through Amazon Smile
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Give gifts that give back and support childhood cancer research this holiday season and all year round with 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://smile.amazon.com/" target="_blank"&gt;&#xD;
      
           Amazon Smile
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ! Select Solving Kids’ Cancer as your preferred charity and Amazon will donate 0.5% of the price of your eligible purchases.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           4. Increase Your Impact with Employer Matching
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Do you want to double — possibly triple — your support of pediatric cancer research? Check with your employer to see if they offer a matching gift program and select Solving Kids’ Cancer as your charity of choice. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           5. Make a Donation in Honor of a Child With Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Give a donation this holiday season to honor a child with cancer. Every gift helps us get closer to a world where no child will die from cancer and survivors live longer, healthier lives.
           &#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_how_to_support_holiday_22&amp;amp;utm_campaign=eoy&amp;amp;utm_source=blog_how_to_support_holiday_22&amp;amp;utm_medium=blog&amp;amp;utm_content=year-end_blog" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate.png" alt="A pink donate button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-47-768x644.png" length="854562" type="image/png" />
      <pubDate>Mon, 21 Nov 2022 08:47:58 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/how-to-support-solving-kids-cancer-this-holiday-season</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-47-768x644.png">
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        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>5 Ways to Support a Caregiver During National Family Caregivers Month</title>
      <link>https://www.solvingkidscancer.org/blog/national-caregiver-month</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           When your child has cancer, caregiving isn’t a choice — it’s a necessity. November is National Family Caregivers Month — a time to recognize the 53 million caregivers in the U.S.1 who provide critical, around-the-clock support to their loved ones. Caregivers, especially those caring for children with cancer, face overwhelming stress, financial strain, and emotional burnout.
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      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Take Cindy Campbell, for example. When her son, Ty, was diagnosed with a rare brain tumor, her world turned upside down. She left her corporate job to become his 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like/" target="_blank"&gt;&#xD;
      
           full-time caregiver
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . “It became an immediate life change in every way,” Cindy recalled. Cancer carers like Cindy often face isolation, overwhelming decisions, and the constant pressure to make the right choices for their child. But there are ways we can help. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           During National Family Caregivers Month, we’re sharing five practical ways to support caregivers, along with key facts and statistics to better understand their challenges.
          &#xD;
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&lt;/div&gt;&#xD;
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           1. Give Them Time for Themselves
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           Parents caring for a child with cancer often put themselves last. With constant medical appointments, treatments, and care tasks, self-care is often pushed aside.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/23-percent-of-caregivers.png" alt="A purple background with white text that says 23 % of caregivers report that their health has worsened"/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           One way to support a cancer caregiver is to give them time for themselves. Offer to step in for a few hours, allowing them to rest or run personal errands without guilt. This small act can help them recharge both mentally and physically, reducing the risk of burnout. While reflecting on this, I recently read an article on 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://cointelegraph.com/igaming/nl/beste-online-casino-nederland/" target="_blank"&gt;&#xD;
      
           Cointelegraph
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            about the impact of blockchain in healthcare, including systems designed to streamline caregiving logistics and secure patient records. Such innovations could play a role in easing caregivers’ burdens in the future. For now, hiring professional respite care or organizing a care schedule with friends and family can provide much-needed breaks for caregivers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
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           2. Be There to Listen
          &#xD;
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    &lt;span&gt;&#xD;
      
           Caregiving can be an isolating experience, especially when few people understand the emotional toll it takes. Cindy shared, “I really felt alone. It’s hard when nobody understands what you’re going through.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Studies-show-that.png" alt="A purple background with the words studies show that caregivers who have strong social support systems experience lower levels of stress and better mental health outcomes"/&gt;&#xD;
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           Being a compassionate listener can make a significant difference. You don’t need to have all the answers — just being there can help. You can also suggest emotional support groups for families of cancer patients. These 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/research-and-care-neuroblastoma-parent-global-symposium-2023/" target="_blank"&gt;&#xD;
      
           groups help caregivers connect with others
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            who truly get it. Knowing they aren’t alone makes a huge difference.
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           3. Help with Daily Tasks
          &#xD;
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  &lt;p&gt;&#xD;
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           Cancer families often struggle to keep up with everyday things like cooking, cleaning, and grocery shopping. The simplest tasks can feel overwhelming when you’re focused on your child’s care.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Nearly-60-percent.png" alt="A purple background with white text that says nearly 60 % of family caregivers report having trouble balancing their caring responsibilities"/&gt;&#xD;
&lt;/div&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           You can help ease their load by offering to handle some of these daily chores. Prepare a home-cooked meal, run errands, or assist with household cleaning. These small acts of kindness not only relieve the caregiver’s mental burden but also give them more time to focus on their loved one’s care. It may seem small, but it can have a big impact on a caregiver’s daily life.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           4. Show Them You See Them
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Despite the enormous physical and emotional toll of caregiving, many caregivers feel unappreciated or unseen. Like many cancer carers, Cindy often hears “you’re so strong,” but rarely receives recognition for the day-to-day sacrifices she makes. This can make the caregiving journey feel even lonelier.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Showing appreciation for caregivers can go a long way. A simple thank-you note, flowers, or even a sincere conversation acknowledging their hard work can brighten their day. Caregivers often put their own emotional needs aside, and a small gesture of recognition can remind them that their efforts are noticed.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/36-percent-of-carergivers.png" alt="A purple background with white text that says 30 % of caregivers report high levels of stress"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           5. Support Childhood Cancer Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For caregivers of children battling the deadliest cancers, one of the most meaningful ways to support them is by 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/other-ways-to-support/" target="_blank"&gt;&#xD;
      
           contributing to childhood cancer research
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Many cancer caregivers live in the hope that new treatments or cures will one day become available to ease their children’s suffering. Research not only offers potential cures but also provides better, less invasive treatment options that can improve a child’s quality of life.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           By donating to Solving Kids’ Cancer, you are directly supporting the advancement of life-saving therapies and easing the burden on caregivers. Financial contributions fuel groundbreaking research, providing hope to families facing challenging diagnoses. Recently, while exploring innovative funding methods, I came across 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.richmondreview.co.uk/crypto-casinos-uk/" target="_blank"&gt;&#xD;
      
           bitcoin gambling UK
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , where a portion of users’ earnings are sometimes directed towards charitable causes. This sparked an idea: in honor of National Family Caregivers Month, consider making a donation to fund research that can transform the future for children and their caregivers. Every contribution brings us closer to new treatments and a brighter future.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://secure.solvingkidscancer.org/donation.jsp?campaign=202&amp;amp;utm_source=caregivers_mo_blog&amp;amp;utm_medium=website&amp;amp;utm_campaign=nov_caregivers_mo&amp;amp;utm_id=skc_year_end" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate-de9aa52b.png" alt="A pink donate button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/cindy-and-Ty.png" length="124923" type="image/png" />
      <pubDate>Wed, 02 Nov 2022 19:58:39 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/national-caregiver-month</guid>
      <g-custom:tags type="string" />
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    </item>
    <item>
      <title>Supporting Pediatric Cancer Research: Solving Kids’ Cancer’s Year-in-Review</title>
      <link>https://www.solvingkidscancer.org/blog/supporting-pediatric-cancer-research-solving-kids-cancers-year-in-review</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A Message from Scott Kennedy, executive director
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Throughout the year, Solving Kids’ Cancer (SKC) has continued funding
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/role-impact#ResearchAdvocacy"&gt;&#xD;
      
           cutting-edge research
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            to find cures for children with the most aggressive cancers. Research is key in unlocking solutions and providing improved outcomes for kids. SKC prioritizes taking cutting-edge ideas, based on scientific evidence, from the lab to the clinic to benefit children.
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When it comes to childhood cancer, there is no time to waste. Your support and generosity have helped us take bold action to drive innovation forward, push for promising childhood cancer research initiatives, and provide vital resources for families affected by these devastating diseases.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Thank you for being a part of this journey to create real, tangible change for kids fighting cancer and those living with its long-term effects. Here’s a look at some of SKC’s biggest achievements that supporters like you helped make possible in 2022:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Landmark Pediatric Cancer Research Projects
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           SKC’s funding and leadership have led to landmark strides in research and treatment, including:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Laptop.webp" alt="A computer monitor with a graph and a dna strand on it."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
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      &lt;span&gt;&#xD;
        
            First frontline treatment for children diagnosed with ETMR cancer, a very deadly and rare pediatric tumor
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
             
           &#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/landmark-transatlantic-trial-for-children-with-high-risk-neuroblastoma-funded-by-parent-led-charities"&gt;&#xD;
        
            First US-EU collaborative trial
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             testing a novel drug in newly-diagnosed high-risk neuroblastoma patients
             &#xD;
          &lt;br/&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Testing a new CAR-T cell therapy specifically targeting ETMR and medulloblastoma cancer cells 
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Leadership in Global Research Advocacy
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            SKC has continued to earn
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/role-impact#LandscapePresence"&gt;&#xD;
      
           a seat at the table
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            among childhood cancer research specialists, contributing to the direction of therapeutic development worldwide:
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Brain.webp" alt="A pink icon of a person with a light bulb above their head."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Member, Pediatric Central Review Board, National Cancer Institute (NCI) (2015-Present)
            &#xD;
        &lt;span&gt;&#xD;
          
             ﻿
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Member, Patient and Family Advisory Committee, Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER) (2020-Present)
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
             Advocate, Strategy Forum for DNA Damage Repair, ACCELERATE, Amsterdam, NL (2022)
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Pediatric Cancer Research Publications
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In addition to participating in committees worldwide, SKC has authored recognized journals supporting pediatric cancer research advancements, including:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Publications.webp" alt="A purple icon of a newspaper on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
             A systematic literature review to identify ethical, legal, and social responsibilities of nonprofit organizations when funding clinical trials in pediatric cancer (June 2022)
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            The Critical Role of Academic Clinical Trials in Pediatric Cancer Drug Approvals: Design, Conduct, and Fit for Purpose Data for Positive Regulatory Decisions (August 2022)
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            To transplant, or not to transplant? That is the question. A patient advocate evaluation of autologous stem cell transplant in neuroblastoma (April 2022) 
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The Return of SKC’s Biggest Fundraiser of the Year
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            After a two-year hiatus of our annual signature fundraiser, SKC held the
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/lace-up-for-kids-2022"&gt;&#xD;
      
           Spring Celebration Gala
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , celebrating our families, supporters, and mission impact:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Giving.webp" alt="A hand is holding a heart and a dollar sign."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            The event raised $500,000 to support pediatric cancer research to advance cures and treatments.
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            200 guests were in attendance: cancer families well as supporters, many of which are industry leaders.
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
             The 2022 Spring Gala marked SKC’s 15th year as we continue to fund and advocate in over 15 countries.
           &#xD;
      &lt;/span&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lace Up For Kids Childhood Cancer Awareness Campaign 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            For the 5th year in a row, our
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/lace-up-for-kids-2022"&gt;&#xD;
      
           Lace Up For Kids
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            campaign returned in September for Childhood Cancer Awareness Month to support and raise funds for kids fighting cancer:
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Laces.webp" alt="A yellow bow on a white background"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Over 38,000 gold laces were distributed to more than 30,000 participants from all 50 states and 4 countries
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
             $26,000+ was raised to support pediatric cancer research and improve survivorship for children
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Schools contributed to more than half of Lace Up for Kids fundraising.
            &#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           We’re proud of this year’s exciting progress in childhood cancer research — but until we find more cures, there’s still so much to accomplish. Research requires funding to continue and your support is critical in propelling new treatment options to save more lives. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Present.webp" alt="A pink gift box with a bow and ribbon on a white background."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As we head into the holiday season, there are several ways to support pediatric cancer research and give hope to kids and families fighting childhood cancer, such as: 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
              Creating a
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://www.facebook.com/SolvingKidsCancer/fundraisers" target="_blank"&gt;&#xD;
        
            Facebook Fundraiser
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
              Spreading the word on social media (we’re on
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://www.facebook.com/SolvingKidsCancer" target="_blank"&gt;&#xD;
        
            Facebook
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ,
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://x.com/solvekidscancer" target="_blank"&gt;&#xD;
        
            Twitter
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             , and
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://www.instagram.com/solvingkidscancer/" target="_blank"&gt;&#xD;
        
            Instagram
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ) 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Making a
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_year_in_review_22&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_year_in_review_22&amp;amp;utm_medium=blog&amp;amp;utm_content=skc_year_in_review_22" target="_blank"&gt;&#xD;
        
            tax-deductible donation
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;br/&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            On behalf of the entire Solving Kids’ Cancer team, thank you for your belief that
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           every kid deserves to grow up. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           With deep gratitude,
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Scott Kennedy
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Executive Director &amp;amp; Co-Founder
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/maxresdefault.webp" length="54920" type="image/webp" />
      <pubDate>Mon, 31 Oct 2022 04:27:24 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/supporting-pediatric-cancer-research-solving-kids-cancers-year-in-review</guid>
      <g-custom:tags type="string" />
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    </item>
    <item>
      <title>This Week in Pediatric Oncology Podcast’s 100th Episode</title>
      <link>https://www.solvingkidscancer.org/blog/twipo-100th-episode</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/EDITED-TWIPO-1-768x768.png" alt="This week in pediatric oncology with dr. timothy cripe and dr. brenda weigel from the university of minnesota"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Happy 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://youtu.be/8Lj3uFHWo60" target="_blank"&gt;&#xD;
      
           100th Episode
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           This Week in Pediatric Oncology (TWiPO) Podcast
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ! TWiPO is a free childhood cancer podcast dedicated to supporting families and advancing research through weekly discussions of trending topics and exciting new developments in pediatric cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Produced by 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/about/" target="_blank"&gt;&#xD;
      
           Solving Kids’ Cancer
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            (SKC), TWiPO is hosted by Dr. Timothy Cripe, chief of the Division of Hematology and Oncology at Nationwide Children’s Hospital and Dr. Brenda Weigel, director of the Division of Pediatric Hematology/Oncology and professor at the University of Minnesota’s Cancer Center and the Department of Pediatrics. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Each 35-minute podcast explores 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/the-latest/the-latest-all-2/" target="_blank"&gt;&#xD;
      
           breakthroughs in childhood cancer research
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            , interviews with the world’s leading experts and honest conversations with families affected by cancer. 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To celebrate the milestone event of 100 episodes, TWiPO hosts, Dr. Timothy Cripe &amp;amp; Dr. Brenda Weigel, are joined by SKC’s Executive Director, Scott Kennedy, and Director of Research Advocacy, Donna Ludwinski. They look back on the history, creation and memorable moments of TWiPO, some of their favorite episodes over the past 11 years, as well as share what lies ahead for the cancer research podcast.
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           The Beginnings of TWiPO
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           As host Dr. Timothy Cripe explains in the first opening minutes of the 100th episode, TWiPO began as a way to take complicated ideas of pediatric oncology research and explain them in a way most people would understand.
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           Born out of Dr. Cripe’s office, SKC’s initial purpose for the podcast was to have conversations about 
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    &lt;a href="https://solvingkidscancer.org/skcpublications/" target="_blank"&gt;&#xD;
      
           pediatric cancer research publications
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            and share experts’ take on the research’s strengths and weaknesses. As Dr. Cripe shares, TWiPO was intended for people listening in to understand the challenges of current research and roadblocks scientists often faced when advancing treatments.
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           Favorite Moments for the Cancer Research Podcast
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           Of course, a walk down memory lane wouldn’t be complete without reminiscing on the cancer podcast’s favorite moments. The hosts share which of the many incredible interviews personally impacted them. Dr. Cripe kicks it off by talking about 
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    &lt;a href="https://solvingkidscancer.podbean.com/e/twipo-21-interview-with-dr-beatrice-lampkin/" target="_blank"&gt;&#xD;
      
           episode 21 with Dr. Beatrice Lampkin
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           , former pediatric hematologist-oncologist at Cincinnati Children’s Hospital. Sincerely devoted to her patients in spite of the dire outcomes, Dr. Lampkin recounted how she did daily bone marrow assessments on patients to determine if cancer cells were dying from their chemotherapy treatments.
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           Another 
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           favorite episode
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            from the podcast was shared by Scott, who appreciated the innovative work of Dr. Michael Taylor from SickKids (the Hospital for Sick Children) in Canada and Nabil Ahmed from Baylor Texas Children’s Hospital. Dr. Taylor and Dr. Ahmed are co-authors of a research publication discussing novel therapy approaches for 
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    &lt;a href="https://solvingkidscancer.org/blog/medulloblastoma-in-children/" target="_blank"&gt;&#xD;
      
           medulloblastoma
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           . 
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           Solving Kids’ Cancer’s Impact on Pediatric Cancer Research
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           Before concluding, TWiPO host, Dr. Cripe, turns the episode over to Scott and Donna to talk about the charity and driving force behind the podcast: Solving Kids’ Cancer (SKC). Scott shares that their motivation for doing what they do comes from being parents themselves of children with cancer. 
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           ”One of the key things about SKC that we wanted to do from day one is to really direct the work that we do to where the best science is and the best people to carry that out,” says Scott. He believes in the importance of understanding current pediatric cancer research to be able to influence and strengthen the science, resulting in more cures for children.
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           In forming SKC, the founders recognized that rare, aggressive pediatric cancers had the greatest area of unmet need, steering them to focus on maximizing 
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    &lt;a href="https://solvingkidscancer.org/role-impact/" target="_blank"&gt;&#xD;
      
           impact on these high-risk cancers
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            to give hope to families who were facing the poorest survival rates. This is where SKC invests funding and advocacy, so that the development of 
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           clinical trials
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            will lead to effective treatments for children with cancer.
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           The Future of TWiPO
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           Since its first podcast in April 2011, TWiPO has already seen over 80,000 downloads from all over the world, from countries as far away as Vietnam, Peru, and Iraq. Currently, 103 countries make up the listening audience of TWiPO, expanding the platform of pediatric cancer research advocacy into a global movement.
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           Through in-depth discussions, our highly-rated childhood cancer podcast has been able to help people understand the latest advancements in research such as 
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    &lt;a href="https://solvingkidscancer.org/blog/advancing-dipg-cancer-research/" target="_blank"&gt;&#xD;
      
           CAR-T Cell Therapy
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           , 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7757338/" target="_blank"&gt;&#xD;
      
           genomic analyses
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           , and 
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    &lt;a href="https://solvingkidscancer.org/blog/targeted-therapy-for-children-with-alk-driven-neuroblastoma/" target="_blank"&gt;&#xD;
      
           targeted therapies
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           , while advocating for the need for more funds to continue this important work for children with cancer.
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           So, what does the future of TWiPO look like? As Scott shares, one of the priorities for TWiPO is to highlight research that is making a notable difference in treatment approaches, motivating more supporters to strategize improvements in pediatric oncology. Moving forward, he also aims for TWiPO to not only continue to inform, but to inspire hope as well in 
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    &lt;a href="https://solvingkidscancer.org/blog/using-research-advocacy-to-improve-outcomes/" target="_blank"&gt;&#xD;
      
           families and advocates
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           , mentoring the next generation of leaders in the childhood cancer space. 
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           Subscribe to TWiPO Today 
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           The more we learn, share ideas, and work together, the sooner we’ll reach the day when all childhood cancers are curable. As always, keep up the fight and 
          &#xD;
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    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      
           stay up-to-date
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    &lt;span&gt;&#xD;
      
            with advancements being made in childhood cancer, conversations with leaders in pediatric oncology as well as inspiring families. 
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           Subscribe to TWiPO
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    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkLnBvZGJlYW4uY29tL3NvbHZpbmdraWRzY2FuY2VyL2ZlZWQueG1s" target="_blank"&gt;&#xD;
      
           Google Podcasts
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            | 
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           Spotify
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            | 
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    &lt;a href="https://podcasts.apple.com/us/podcast/this-week-in-pediatric-oncology/id806379467" target="_blank"&gt;&#xD;
      
           Apple Podcasts
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            | 
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           YouTube
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&lt;/div&gt;</content:encoded>
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      <pubDate>Wed, 19 Oct 2022 16:38:37 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/twipo-100th-episode</guid>
      <g-custom:tags type="string" />
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    </item>
    <item>
      <title>What’s Needed to Improve Treatments for Neuroblastoma?</title>
      <link>https://www.solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Neuroblastoma is a heterogenous type of pediatric cancer, meaning that the tumor cells might be subtly or dramatically different even within the same tumor within the same patient. It’s the most common solid tumor outside of the brain in children. About 800 children are diagnosed with neuroblastoma each year in the United States, and half of the children have the high-risk form of the disease.1
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           Despite current treatments, approximately 50% of children diagnosed with high-risk neuroblastoma do not survive past five years.2 In some patients, neuroblastoma never goes away, while others can experience a relapse even after remission. For survivors, most suffer from serious and long-term effects of the treatments they received into adulthood. 
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    &lt;/span&gt;&#xD;
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           To meet the need for improved neuroblastoma treatments, Solving Kids’ Cancer funds breakthrough research and innovative 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
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            that will minimize late effects and improve survivorship for children. 
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           What is Neuroblastoma?
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    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           Neuroblastoma
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            is a cancerous tumor that develops in the nervous system of babies and very young children, usually under 5 years of age. It can often originate in the adrenal glands, which sit on top of the kidneys, and are responsible for making hormones and managing other vital bodily functions, like digestion, blood pressure, breathing and heart rate. Neuroblastoma can also begin in the nerve tissue of the spinal cord, abdomen, chest and neck.
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           This type of childhood cancer is challenging because its cancer cells can spread and grow rapidly into critical areas of the body that are difficult to directly treat, most commonly in the bone and bone marrow. In fact, nearly 67% of children with neuroblastoma develop a metastatic disease.3 
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           The 
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    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           signs and symptoms of pediatric neuroblastoma
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            can vary depending on where the tumor is located and how much the cancer has grown. Typically, by the time children experience symptoms, the cancer has spread to other parts of the body. 
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-28-768x576.png" alt="A doctor examines a young boy 's ear in a hospital."/&gt;&#xD;
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           Neuroblastoma Treatments and the Need for Advanced Research
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           Doctors and families work together to tailor the best treatment approach for a child’s neuroblastoma. Neuroblastoma treatment plans will vary depending on the risk category, which is determined from the child’s age, presence of metastatic disease, and certain characteristics of the tumor.
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           Survival rates of neuroblastoma are divided into three groups, which can be described as the following: 
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           • Low-risk neuroblastoma
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            — Children with low-risk neuroblastoma may not need treatment and will be watched closely to make sure their tumor doesn’t get bigger. Sometimes, the tumor will be surgically removed and chemotherapy may follow.
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           • Intermediate-risk neuroblastoma
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            — Children with intermediate-risk neuroblastoma will usually require surgery to remove the tumor at its location and in areas where it has spread. Neuroblastoma patients will then receive chemotherapy after surgery.
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           • High-risk neuroblastoma
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            — Approximately 50% of children diagnosed with neuroblastoma are in the high-risk category.4 They will need very intensive treatments due to the aggressive nature of the tumor. Treatment usually includes chemotherapy, surgery, one or two transplants, radiation therapy, and immunotherapy. 
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  &lt;h3&gt;&#xD;
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           The Problems with Treating High-Risk Neuroblastoma
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           While low-risk and intermediate-risk neuroblastoma can often be cured with little to no treatment, high-risk neuroblastoma is aggressive and harder to cure. Even with intensive treatments, children with high-risk neuroblastoma typically have a poor prognosis.
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           In cases called 
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    &lt;a href="https://solvingkidscancer.org/blog/therapeutic-antibody-treatment-options-for-relapse-refractory-neuroblastoma/" target="_blank"&gt;&#xD;
      
           refractory neuroblastoma
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           , about 10-15% of high-risk patients also have difficulty responding to initial treatment.5 An even greater percentage, about half, have cancer that returns after treatment because it has become resistant to conventional protocols.6 In these cases, called relapse or recurrent neuroblastoma, the tumor may regrow in its original site or reappear in the bones, bone marrow, or other sites.
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           At this time, few children survive long-term after relapse, and there is no standard agreement on the most effective therapy. 
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  &lt;h3&gt;&#xD;
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           Late Effects of Neuroblastoma Treatments
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Another challenge for children with neuroblastoma are late effects from treatments, which describe health problems that don’t show up until months or years later. Major advancements in neuroblastoma treatment have helped increase survival rates for all risk groups, but survivors of high-risk neuroblastoma often suffer from health problems later on in life.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Children who received the traditional multimodal therapies of surgery, chemotherapy and radiation, are more likely to have serious long-term effects. Some of these may include:
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      &lt;br/&gt;&#xD;
      
              • 
          &#xD;
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    &lt;span&gt;&#xD;
      
           Hearing loss
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      &lt;br/&gt;&#xD;
      
              • 
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           Bone and muscle problems
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      &lt;br/&gt;&#xD;
      
              • 
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Thyroid issues
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    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              • 
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           Growth and development problems
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    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           Fertility problems
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      &lt;br/&gt;&#xD;
      
              •
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neurological and nervous system problems
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      &lt;br/&gt;&#xD;
      
              • 
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           Second cancers
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      &lt;br/&gt;&#xD;
      
              • 
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           Behavioral, emotional, and mental health issues
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To minimize treatment-related risks, a recent focus of research is finding safer, more effective therapies that would maintain increased survival rates and improve quality of life for children with neuroblastoma.
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    &lt;/span&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           Hurdles to Improved Neuroblastoma Treatments
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For children with neuroblastoma, clinical trials are more necessary than ever. Why? Because they are key to discovering new treatments and provide access to novel therapies for patients with the worst neuroblastoma prognoses.
          &#xD;
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But, in order for better pediatric cancer treatments to become mainstream, there are multiple hurdles to overcome. To be approved, clinical trials must have sufficient funding and regulatory approvals.7 Pediatric clinical trial drugs also need an ongoing supply, but pharmaceutical companies prioritize adult trials because 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/role-impact/" target="_blank"&gt;&#xD;
      
           drugs for rare pediatric cancers are simply not as lucrative
          &#xD;
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    &lt;span&gt;&#xD;
      
           . As a result, it can take years before a clinical trial drug is approved on the market.8 
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           Unfortunately, children with the rarest, most fatal cancers don’t have time on their side. 
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      &lt;span&gt;&#xD;
        
            ﻿
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           Solving Kids’ Cancer’s Funded Research Projects for Neuroblastoma
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Even after aggressive treatments, children with high-risk neuroblastoma continue to regress from poor outcomes, while survivors of neuroblastoma remain at risk for serious long-term health problems. At Solving Kids’ Cancer, we invest in next-generation preclinical research and early phase clinical trials to help build streamlined therapies with the aim of changing this reality. 
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    &lt;/span&gt;&#xD;
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           Since 2008, we’ve funded 29 neuroblastoma clinical trial and development projects. Read more about some of the recent research that is advancing promising approaches for the treatment of children with neuroblastoma:
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  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/targeted-therapy-for-children-with-alk-driven-neuroblastoma/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            • 
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           Targeted Therapy for Children with ALK-Driven Neuroblastoma
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            – This transatlantic clinical study examines the use of an investigational drug for lung cancer Lorlatinib, for the treatment of ALK mutated relapsed or refractory neuroblastoma. This work rapidly led to the first US-EU collaboration to test the drug in newly diagnosed ALK+ neuroblastoma patients, supported by a large collaboration of charities led by Solving Kids’ Cancer.
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    &lt;a href="https://solvingkidscancer.org/blog/poppys-journey/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            • 
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           MiniVan Trial for Children With Relapsed/Refractory Neuroblastoma
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            – This phase I clinical trial combines three treatments: radiotherapy, immunotherapy and monoclonal antibody to treat neuroblastoma that has continued to grow during treatment or came back after treatment.
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    &lt;a href="https://inrgdb.org/wp-content/uploads/2019/12/2018-01-Moreno.pdf" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            • 
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      &lt;/strong&gt;&#xD;
      
           International Integrated Analysis to Identify Markers of Poor Survival in High-Risk Neuroblastoma
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            – This study aims to analyze biomarkers to identify subcategories of : high risk neuroblastoma that may be better (need less treatment) or worse (need different treatment), and then test new treatment strategies for these children.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8168182/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            • 
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           GPC2 Directed Immunotherapies for Neuroblastoma and Other Pediatric Cancers
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            – This preclinical research developed a new immunotherapy approach targeting GPC2 which is present on neuroblastoma cells.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.piercephillipscharity.org/optimizing-sn22-nanoparticles-to-treat-children-with-high-risk-neuroblastoma/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            • 
           &#xD;
      &lt;/strong&gt;&#xD;
      
           Optimizing SN22 Nanoparticles to Treat Children with High-Risk Neuroblastomas
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            – By using nanotechnology, researchers created a shelf-stable clinical trial drug to test in children with relapsed or refractory high-risk neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://clinicaltrials.gov/ct2/show/NCT02173093" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            • 
           &#xD;
      &lt;/strong&gt;&#xD;
      
           Activated T Cells Armed With GD2 Bispecific Antibody in Children and Young Adults With Neuroblastoma and Osteosarcoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            – This clinical trial tested activated T cells armed with GD2 bispecific antibody in children with relapsed or refractory neuroblastoma or osteosarcoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer is excited to be involved in these cutting-edge studies that have pushed the boundaries of childhood cancer research. Your support helps us get closer to a reality where no child will die from neuroblastoma or suffer from its treatment — 
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    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up
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           . 
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&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/?rbref=https://solvingkidscancer.rallybound.org/donate2skc/Donate&amp;amp;utm_campaign=CTA&amp;amp;utm_source=https://secure.solvingkidscancer.org/forms/donatenow&amp;amp;utm_medium=General&amp;amp;utm_content=" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate.png" alt="A pink donate button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Key Statistics About Neuroblastoma – https://www.cancer.org/cancer/neuroblastoma/about/key-statistics.html#:~:text=Neuroblastoma%20is%20by%20far%20the,about%201%20to%202%20years.
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    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           2 Neuroblastoma – Childhood: Statistics – https://www.cancer.net/cancer-types/neuroblastoma-childhood/statistics
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 Neuroblastoma, Cincinnati Childrens Center – https://www.cincinnatichildrens.org/health/n/neuroblastoma
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4  For Children with Neuroblastoma, Trial Results Highlight Continued Evolution of Treatment –https://www.cancer.gov/news-events/cancer-currents-blog/2019/high-risk-neuroblastoma-tandem-transplant
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5, 6 What is Relapsed/Refractory Neuroblastoma? – https://www.neuroblastoma-info.com/relapsed-refractory-neuroblastoma/
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           7 When Innovation and Commercialization Collide: A Patient Advocate View in Neuroblastoma – https://ascopubs.org/doi/10.1200/JCO.21.01916
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           8 To transplant, or not to transplant? That is the question. A patient advocate evaluation of autologous…transplant in neuroblastoma – https://onlinelibrary.wiley.com/doi/epdf/10.1002/pbc.29663
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    &lt;/span&gt;&#xD;
  &lt;/h5&gt;&#xD;
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      <pubDate>Thu, 13 Oct 2022 08:54:33 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma</guid>
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    </item>
    <item>
      <title>Learn and Connect at Neuroblastoma Parent Symposium 2022</title>
      <link>https://www.solvingkidscancer.org/blog/learn-and-connect-neuroblastoma-parent-symposium-2022</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Research &amp;amp; Care: Neuroblastoma Parent Global Symposium 2022
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           Mark your calendars for the return of the 
          &#xD;
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    &lt;a href="https://www.nbparentsymposium.com/" target="_blank"&gt;&#xD;
      
           Neuroblastoma Parent Global Symposium
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    &lt;span&gt;&#xD;
      
            on Friday, November 3, 2022. A free virtual event, this neuroblastoma conference brings together parents, researchers, medical professionals, clinicians, and charity leaders from across the globe to discuss the latest breakthroughs in 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           neuroblastoma
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    &lt;span&gt;&#xD;
      
            research and supportive care.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hosted online and free to access from anywhere around the world, this year’s event will feature two main tracks, one focused on the neuroblastoma treatments and the other focused on psychosocial support for neuroblastoma. The event program will include live discussions, presentations from internationally renowned experts, networking opportunities, specialized conversation rooms, and Q&amp;amp;A sessions.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://www.nbparentsymposium.com/#sign-up" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Email-sign-up-Button-300x75.png" alt="A pink sign up for updates button on a white background."/&gt;&#xD;
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           Here’s a sneak peek of what attendees can expect:
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    &lt;/span&gt;&#xD;
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    &lt;br/&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           Latest Developments in Neuroblastoma Research
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  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The dynamic field of neuroblastoma research continues to expand, with the latest insights providing hope for affected families worldwide. This year’s symposium will shine a spotlight on these 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/collaborative-effort-of-nonprofits-yields-big-results-for-treating-high-risk-neuroblastoma/" target="_blank"&gt;&#xD;
      
           cutting-edge developments
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    &lt;span&gt;&#xD;
      
           . Attendees will have an opportunity to delve deep into the scientific advances and understand their implications for the patients. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Overview of Frontline Neuroblastoma Treatments
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    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Understanding the frontline options for 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           neuroblastoma cancer treatment
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is crucial for parents and caregivers. This segment of the symposium will outline the current standard therapies available. It will clarify the procedures, expected outcomes, and potential side effects. Having this knowledge can empower parents to make informed decisions and advocate for their child’s best interests.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Treatment for Relapse and Refractrory Neuroblastoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Dealing with relapsed or refractory neuroblastoma poses unique challenges. This track will offer insights into the latest options for 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/poppys-journey/" target="_blank"&gt;&#xD;
      
           neuroblastoma therapy
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            specifically designed to address these more resistant forms of the disease. Renowned specialists will share their expertise, ensuring attendees have a comprehensive view of the latest therapeutic strategies.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Advances in Neuroblastoma Immunotherapy
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    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Immunotherapy is rapidly emerging as a powerful tool in the fight against neuroblastoma. The symposium will delve into the newest approaches, including CAR T cells, detailing how the body’s immune system can be harnessed to target and destroy neuroblastoma cells. The sessions will cover the latest trials, results, and the promising future this modality holds.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Advocacy in Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Promoting research is essential for the advancement in the field of neuroblastoma. This segment will empower parents and caregivers with knowledge about the ongoing studies, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and how they can play a role in advancing the field. Expert-led panels will shed light on the importance of advocacy and provide tools for active participation.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/NPGS-23-infographic-1024x354.png" alt="Over the last three years , we have broadcasted in over 58 countries"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Supportive Care
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like/" target="_blank"&gt;&#xD;
      
           Living with neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is a journey that extends beyond the clinic. This neuroblastoma conference emphasizes the importance of holistic support, addressing both the emotional and practical needs of families throughout each phase of the experience. With expert advice and shared stories, we seek to nurture the entire family unit, ensuring no one feels alone in this journey.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Psychosocial Support
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The mental and emotional well-being of affected families is key to overcoming the hardships of the disease. This session will focus on strategies to cope, address anxiety, and build resilience. Therapists and counselors will share practical tools for navigating the psychosocial challenges that arise.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Post-Treatment and Late Effects
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The journey doesn’t end after treatment. This segment will help parents understand and prepare for the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           potential late effects
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            of neuroblastoma treatment. Specialists will discuss monitoring, managing, and mitigating these long-term impacts on children’s health.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Grief and Loss
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Navigating the profound emotions that come with 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/lessons-before-and-after-childhood-cancer/" target="_blank"&gt;&#xD;
      
           grief and loss
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            requires compassion and understanding. This sensitive segment will offer a safe space for parents to share, reflect, and find solace. Expert facilitators will guide discussions, ensuring attendees feel supported.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stories of Hope – Living and Achieving Post-Treatment
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hope is the thread that binds the neuroblastoma community. In this uplifting session, parents and survivors will share their inspiring journeys post-treatment. Their stories will illuminate the path to resilience, achievement, and the potential for a vibrant life beyond neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The Neuroblastoma Parent Global Symposium promises a comprehensive, parent-centric experience. From expert talks to parent perspectives, from enlightening panel discussions to Q&amp;amp;A sessions — this is an event curated by parents, for parents. Let’s come together to chart the path forward in the world of neuroblastoma care and research.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://www.nbparentsymposium.com/#sign-up" target="_blank"&gt;&#xD;
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      <pubDate>Sun, 02 Oct 2022 20:46:21 GMT</pubDate>
      <author>kristi@solvingkidscancer.org (Kristi McKay)</author>
      <guid>https://www.solvingkidscancer.org/blog/learn-and-connect-neuroblastoma-parent-symposium-2022</guid>
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      <title>Pediatric Brain Tumors and Solving Kids’ Cancer’s Impact</title>
      <link>https://www.solvingkidscancer.org/blog/pediatric-brain-tumors-and-our-impact</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           As a childhood cancer charity, Solving Kids’ Cancer focuses on the rarest and most fatal pediatric cancers. By funding early investigational research, both pre-clinical and clinical, Solving Kids’ Cancer helps to expand possible treatment options for kids as well as raise the bar on their standard of care through research advocacy.
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           This September for 
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    &lt;a href="https://solvingkidscancer.rallybound.org/2022-lace-up-for-kids?&amp;amp;s_src=paidsearch&amp;amp;s_subsrc=google&amp;amp;gclid=Cj0KCQjwpeaYBhDXARIsAEzItbE5D7UPjF0lL-8o7AKLNNxusEboCz3n7qqz0dL7_23KwMEiR7gWu7YaAgbQEALw_wcB" target="_blank"&gt;&#xD;
      
           Childhood Cancer Awareness Month
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           , Solving Kids’ Cancer is spotlighting the need for increased research on pediatric brain tumors, the leading cause of death among childhood cancer patients. While there have been significant improvements in some childhood cancers, survival rates of rare and aggressive brain tumors are still unacceptably low — mostly due to insufficient funding for research to speed the discovery of cures.
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           The Challenges of Pediatric Brain Tumors
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           Pediatric brain tumors are the second most commonly diagnosed cancer in children, representing 29.9% of total childhood cancer deaths1, with 1/3 of childhood brain and central nervous system (CNS) cancers occurring among those aged 5-9. The average age of death is age 9.2 
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           Children who are treated for brain tumors also have the highest risk of serious late effects from their cancer treatment, including second cancers, joint replacement, hearing loss, and congestive heart failure,3  as well as 
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    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           fertility issues
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            due to cranial radiation.
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           Even with the most intensive traditional therapies, brain tumors are the toughest to treat and overcome, due in part to their aggressive and fast-growing behavior. There is also relatively little research done on them because current, innovative therapies are prioritized for adults and 
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           prevalent diseases, which typically bring in more funding
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           . 
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           This is where Solving Kids’ Cancer fills the gap.
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           At Solving Kids’ Cancer, we help to identify current unmet needs and fund breakthrough research to find cures with fewer treatment side effects for these fatal childhood cancers. We’re primarily focused on funding and advocating the research for brain tumors, including these three: medulloblastoma, embryonal tumor with multilayered rosettes (ETMR), and atypical teratoid rhabdoid tumor (ATRT).
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           Facts About Medulloblastoma
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    &lt;a href="https://solvingkidscancer.org/blog/medulloblastoma-in-children/" target="_blank"&gt;&#xD;
      
           Medulloblastoma
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            is the most common malignant pediatric brain tumor. It accounts for about 20% of all childhood brain tumors.4 The most common age of diagnosis is between 5 and 9 years old, with approximately 350-500 diagnosed each year in the United States.5
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           Medulloblastoma develops from the back part of the brain called the cerebellum, an area of the brain that regulates balance and coordination. It is a fast-growing tumor that can quickly spread to other parts of the brain and spinal cord. 
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           Some of the signs and symptoms of medulloblastoma include:
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                 • Headaches
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                 • Nausea and vomiting
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                 • Lack of energy
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                 • Clumsiness or loss of balance
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                 • Dizziness
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                 • Change in vision
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           Medulloblastoma is an aggressive brain tumor that quickly spreads. Once it spreads to the spinal cord, patient survival rates drop to 60%.6
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           Facts About ETMR
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    &lt;a href="https://solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol/" target="_blank"&gt;&#xD;
      
           ETMR
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            is a rare and aggressive pediatric brain tumor, attacking the youngest of patients. 92% of children diagnosed with ETMR are under the age of three.7
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           ETMR is made up of small, round and blue cell tumors originating from embryonic cells that remain in the brain even after a child has been born. Typically, this type of pediatric cancer develops in the largest part of the brain called the cerebrum, but can also be found in the brainstem and spinal cord.
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           Some of the signs and symptoms of an ETMR tumor include:
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                 • Loss of balance
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                 • Slow speech
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                 • Seizures
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                 • Nausea and vomiting
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                 • Sleepiness or lack of energy
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                 • Eye problems
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                 • Changes in behavior including irritability, aggravation and anxiety
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           ETMR is a rare brain tumor that behaves very aggressively and grows rapidly. Despite current intensive treatment, survival rates of ETMR range between 0 and 30%, with a prognosis of 12 months. 
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           Facts About ATRT
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    &lt;a href="https://solvingkidscancer.org/blog/comparing-atrt-dipg-and-etmr-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           (ATRT)
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            is a rare and fast-growing tumor of the brain and spinal cord. It is found in fewer than 10% of children with pediatric brain tumors.8 While it’s most often seen in children aged 3 or younger, it can also occur in older children and adults.
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           ATRT cancer develops mostly in the cerebellum, the part of the brain that controls movement and balance, or the brain stem, the part of the brain that controls basic body functions.
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           Some of the signs and symptoms of ATRT include:
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                 • Headaches
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                 • Nausea and vomiting
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                 • Sleepiness or lack of energy
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                 • Loss of balance, increasing problems with coordination or trouble walking
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                 • Unusual face or eye movements like twitches 
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                 • Increase in head size (in infants)
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           One of the most difficult childhood cancers to cure, ATRT is aggressive and spreads quickly in a short period of time. Even with current therapies, the survival rate of ATRT is at 32.2%.9
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           Solving Kids’ Cancer’s Role in Pediatric Brain Tumor Research
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           At Solving Kids’ Cancer, we believe that a radical shift in treatment approach is necessary to successfully fight the most deadly pediatric cancers, so we invest in novel therapies that work toward better outcomes for children. 
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      &lt;span&gt;&#xD;
        
            ﻿
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           Learn more about some of the innovative pre-clinical research and early-phase 
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    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
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            we’ve helped fund to expand possible treatment options for children with pediatric brain tumors:
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    &lt;a href="https://solvingkidscancer.rallybound.org/2022-lace-up-for-kids/Donate" target="_blank"&gt;&#xD;
      
           • Anti-PD1 Nivolumab in Children With Brain Tumors
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            — This phase I trial will study the safety of a cancer drug, nivolumab, in children with recurrent brain tumors. It is the first time that this exciting immunotherapy approach is being used in children with brain tumors.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-25-768x576.png" alt="A man and a woman are looking at an x-ray of a person 's head."/&gt;&#xD;
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    &lt;a href="https://solvingkidscancer.rallybound.org/2022-lace-up-for-kids/Donate" target="_blank"&gt;&#xD;
      
           • 
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           First-in-Class Immunotherapy for Relapsed and Refractory Pediatric Brain Tumors — This phase I clinical trial will study the use of APX005M, an immune-activating agent, in pediatric patients with recurrent or refractory brain tumors. Immunotherapy is a promising area of investigation in clinical oncology.
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    &lt;a href="https://solvingkidscancer.rallybound.org/2022-lace-up-for-kids/Donate" target="_blank"&gt;&#xD;
      
           • 
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           ETMR Brain Cancer – Advancing Treatment Protocol — With the help of Dr. Derek Hanson, M.D., Section Chief, Pediatric Neuro-Oncology, and ETMR experts worldwide, a 
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           new consensus protocol
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            was developed for treating ETMR in children, with the aim of improving survival rates.
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  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/2022-lace-up-for-kids/Donate" target="_blank"&gt;&#xD;
      
           • 
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           Modified Measles Virus (MV-NIS) for Children and Young Adults With Recurrent Medulloblastoma or Recurrent ATRT — This clinical research of medulloblastoma treatment studied its behaviors and the safety of new drugs, such as the modified measles virus (MV-NIS), traditionally used for other diseases.
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    &lt;a href="https://solvingkidscancer.rallybound.org/2022-lace-up-for-kids/Donate" target="_blank"&gt;&#xD;
      
           • 
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           A Protocol for the Evaluation of α-difluoromethylornithine (DFMO) in Pre-clinical Studies for the Childhood Brain Tumors ETMR and ATRT — This clinical study examined the effects of a protocol that used new combinations of effective treatments for ETMR and ATRT.
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           We’re proud of the incredible work these ground-breaking trials have achieved, but research depends on funding to continue. Children fighting brain tumors are desperate for safer, more effective treatments to give them a second chance.
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           This Childhood Cancer Awareness Month — help increase awareness of the challenges and unmet research needs of pediatric brain tumors, so we can give hope to more children and their families – 
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           because every kid deserves to grow up
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           .
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  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_pediatric_brain_tumors&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_pediatric_brain_tumors&amp;amp;utm_medium=blog&amp;amp;utm_content=ped_brain_tumors_sept" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate.png" alt="A pink donate button on a white background."/&gt;&#xD;
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           Sources
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  &lt;h5&gt;&#xD;
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           1 Centers for Disease Control and Prevention, NCHS Data Brief No. 257, September 2016,“Declines in Cancer Death Rates Among Children and Adolescents in the United States, 1999-2014 
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    &lt;a href="https://www.cdc.gov/nchs/products/databriefs/db257.htm" target="_blank"&gt;&#xD;
      
           https://www.cdc.gov/nchs/products/databriefs/db257.htm
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           2 National Cancer Institute, SEER Percent of Deaths by Age, All races, Both Sexes 
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           3 National Vital Statistics Report, vol. 62.6, November 4, 2021 
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    &lt;a href="http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet" target="_blank"&gt;&#xD;
      
           http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet
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    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           4, 6  Medulloblastoma – Childhood: Statistics https://www.cancer.net/cancer-types/medulloblastoma-childhood/statistics#:~:text=About%2020%25%20of%20childhood%20brain,ages%20of%205%20and%209.
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  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Study Sheds Light on Treatment Options for Medulloblastoma 
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    &lt;a href="https://www.oncozine.com/study-sheds-light-on-treatment-options-for-medulloblastoma/" target="_blank"&gt;&#xD;
      
           https://www.oncozine.com/study-sheds-light-on-treatment-options-for-medulloblastoma/
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    &lt;/a&gt;&#xD;
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  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           7 ETMR Brain Cancer: Advancing Treatment Protocol 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol/" target="_blank"&gt;&#xD;
      
           https://solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h5&gt;&#xD;
  &lt;h5&gt;&#xD;
    &lt;span&gt;&#xD;
      
           8 About Atypical Teratoid Rhabdoid Tumors 
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    &lt;a href="https://www.cureatrt.org/aboutatrt" target="_blank"&gt;&#xD;
      
           https://www.cureatrt.org/aboutatrt
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    &lt;/a&gt;&#xD;
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  &lt;h5&gt;&#xD;
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           9 Atypical Teratoid Rhabdoid Tumor (ATRT) Diagnosis and Treatment https://www.cancer.gov/rare-brain-spine-tumor/tumors/atrt
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      <pubDate>Tue, 13 Sep 2022 09:00:52 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/pediatric-brain-tumors-and-our-impact</guid>
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    <item>
      <title>Childhood Cancer Predisposition Syndromes</title>
      <link>https://www.solvingkidscancer.org/blog/childhood-cancer-predisposition-syndromes</link>
      <description />
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           Each year over 10,000 children will be diagnosed with cancer in the United States, and cancer remains the number one cause of death from disease in children. While this is alarming, scientists and doctors are making significant progress in developing new treatments and discovering the etiology of various cancers. 
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           This article covers the basics of childhood cancer predisposition syndromes, including examples, how Solving Kids’ Cancer’s advocate was involved in the international workshop that resulted in consensus papers on recommended surveillance for the most common pediatric cancer predisposition syndromes, and the potential for newborn screening. 
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           What is a Predisposition Syndrome?
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           In some cases, cancer risk is hereditary — meaning a child inherits a genetic predisposition to cancer from a birth parent, which is indicated by a specific mutation in the germ-line (normal tissue). A predisposition syndrome carries an increased risk of developing cancer at an earlier age compared to the general population. 
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           How Common Are Childhood Cancer Predisposition Syndromes?
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           Childhood cancer is a very rare disease, affecting a small percentage of all children. Of the 75 million children aged 19 or less in the United States, 16,000 are diagnosed with cancer each year — meaning about 1 in 5000 children will be diagnosed annually.
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           Cancer predisposition genes are suspected in roughly 10% of childhood cancers — so this means approximately 1 in 50,000 children may have a cancer predisposition genetic condition. Additionally, these genes carry a varying risk of cancer occurrence before age 50. Some genes are associated with a very high risk (ie 50% or more) and others indicate a very low risk (ie less than 5%). The varying risk can complicate the decision to recommend aggressive surveillance measures.
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           What Research is Being Conducted on Childhood Cancer Predisposition Syndromes?
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           In early 2016, the Cancer Predisposition Working Group of the Society for Pediatric Oncology and Hematology convened experts to review the available data, categorize the large amount of information, and develop recommendations regarding when a cancer predisposition syndrome should be suspected in a young oncology patient. This meeting resulted in a 
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    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/28168833/" target="_blank"&gt;&#xD;
      
           published review
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            with recommendations in 2017.
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           In October 2016, the American Association for Cancer Research (AACR) sponsored an 
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           international workshop
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            in Boston on pediatric cancer predisposition syndromes under the leadership of the Pediatric Cancer Working Group (PCWG) Steering Committee Chair, Dr. Garrett Brodeur, from Children’s Hospital of Philadelphia. Of the 65 attendees from 11 countries, the sole advocate invited was from Solving Kids’ Cancer, a member of the AACR PCWG Steering Committee. 
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           Medical experts from around the world gathered in Boston for an international workshop on pediatric cancer predisposition syndromes.
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           This three-day workshop convened the world’s top experts in cancer predisposition programs, genetic counselors, radiologists, directors of adult cancer predisposition programs, and other specialties. The goal was to review the state of pediatric cancer predisposition science and develop a consensus on surveillance recommendations for specific syndromes. The workshop resulted in an 
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    &lt;a href="https://www.aacr.org/professionals/membership/scientific-working-groups/pediatric-cancer-working-group/aacr-pediatric-cancer-working-group-aacr-childhood-cancer-predisposition-workshop-articles/" target="_blank"&gt;&#xD;
      
           unprecedented rapid publication rate of 18 papers in 2017 and 2018. 
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           The first paper, from 2017 titled, “
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           Pediatric Cancer Predisposition and Surveillance: An Overview, and a Tribute to Alfred G. Knudson Jr.
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           ,” states that “recent reports suggest that at least 10% of pediatric cancer patients harbor a germ-line mutation in a cancer predisposition gene.” The article explains that some of these patients may have: 
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               • Familial cancer (typically three or more close family members with a particular type of cancer) 
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               • Bilateral, multifocal, or multiple cancers
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               • Earlier age at diagnosis than typical for certain tumors
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               • Physical conditions that may indicate a cancer predisposition syndrome
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               • Tumors that are typical of a genetic predisposition to cancer 
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           Experts recommend that if any of the points above pertain to a child, they should be evaluated at a predisposition center and have germ-line tested for genetic testing for pediatric cancer. 
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           Another example of childhood cancer that can be linked back to predisposition syndromes is leukemia. The AACR series article “
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           Recommendations for Surveillance for Children with Leukemia-Predisposing Conditions
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           ,” lists leukemia as the most common pediatric cancer. Because of its prevalence, much has been uncovered regarding the conditions predisposing individuals to it. Here are a few of the predisposition syndromes associated with leukemia in children: 
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               • Li-Fraumeni Syndrome
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               • Down Syndrome
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               • Fanconi anemia
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           Studies show that birth defects are one of the strongest risk factors for cancer in children, but who is at risk and why? Researchers at Baylor College of Medicine in Texas, led by Dr. Philip Lupo, are examining the relationship between non-chromosomal birth defects and the risk of cancer in children in the 
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    &lt;a href="https://clinicaltrials.gov/ct2/show/NCT05071859" target="_blank"&gt;&#xD;
      
           Genetic Overlap Between Anomalies and Cancer in Kids in the Children’s Oncology Group: The COG GOBACK Study
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           . GOBACK began in late 2021 and plans to accrue 1000 children with birth defects and cancer in five years.
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           How to Determine a Predisposition Syndrome &amp;amp; Plan Surveillance 
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           If a person knows they have a cancer predisposition syndrome or suspects they do due to a family history of cancer, it’s important they seek genetic counseling. This is especially critical if they have a biological child. A primary care physician can evaluate risk factors and provide a referral for genetic testing, which, in most cases, is covered by health insurance. 
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           Genetic testing can be completed with a sample of blood, saliva, a piece of hair, and other bodily fluids, as well as conducted on fetuses by collecting a sample of amniotic fluid (also known as amniocentesis). 
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           If a person has a predisposition syndrome, there are recommended surveillance protocols to detect any cancers early. Here are the ways two well-known cancer predisposition syndromes are monitored by healthcare professionals: 
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               • Li Fraumeni Syndrome:
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            The American Association for Cancer Research lists this syndrome as “
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           among the most aggressive cancer predisposition syndromes characterized by a         high and early-onset cancer risk.
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           ” This syndrome can lead to an array of brain tumors — including 
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           medulloblastoma
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           , soft tissue sarcomas, breast cancer, and more. Surveillance         may include (frequency can vary): blood work, MRIs, ultrasounds, endoscopy or colonoscopy, physical examinations, and preventative surgery (in the case of breast cancer,
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                mastectomy).
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               • Leukemia predisposing syndromes:
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            The American Association for Cancer suggests individuals with leukemia predisposing syndromes first get referred to a specialty center,            where doctors can create a preventative care plan. This may include education about leukemia, physical examinations, and blood and bone marrow tests. 
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           Potential Expansion of Newborn Screening for Predisposition of Pediatric Cancer
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           In an episode of Solving Kids’ Cancer “This Week in Pediatric Oncology (TWiPO)” podcast, co-host Dr. Tim Cripe of Nationwide Children’s Hospital interviewed Dr. Lisa Diller, MD, Vice-Chair, Department of Pediatric Oncology at Boston Children’s Hospital/Dana-Farber Cancer Institute. They discussed the research on newborn genomics screening to include predisposition syndromes.
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           Dr. Diller plans to conduct a pilot study in several hospital settings, where they teach parents about hereditary retinoblastoma — cancer of the retina. Parents can opt-in to have their newborn tested for the RB1 variant, which can lead to this type of cancer. In addition to testing newborns for the RB1 variant, researchers could also test babies for numerous other genes of interest — to perform more robust genetic testing for pediatric cancer. 
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           The importance of expanding testing through studies like Dr. Diller proposed not only serves to inform patients but science as well. And though children who carry a variant of a gene mutation that causes cancer may present a low risk to the general population, in reality, the relative risk to the person who has it can be quite high — leading to a greater likelihood of mortality. 
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           Studies like Dr. Diller’s will help determine whether or not a young child is predisposed to cancer. If they are, it will allow for swift action with screening and surveillance, hopefully leading to increased survivorship. 
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           Help Solving Kids’ Cancer Fund Innovative Research on Predisposition Syndromes
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           Solving Kids’ Cancer prioritizes and funds innovative preclinical research and early phase clinical trials with a strong rationale for potential benefit to children with poor prognosis cancers. As dedicated research advocates, SKC works in the research landscape to advance the work on cancer predisposition syndromes, so children who carry gene mutations that can lead to cancer have the preventative care and surveillance they need to live long lives. 
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           However, screening for predisposition syndromes depends on the cost-effectiveness of genetic testing. Treating pediatric cancer, or any cancer for that matter, costs health insurance companies and families astronomical amounts. As Dr. Diller explained, the hope is that “as the cost of genetic testing decreases or as newborn screening becomes more dependent on genetics, the more cost-effective screening will be for all.”
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           Help SKC increase awareness of cancer predisposition syndromes in children and for the treatment of rare childhood cancers, so we can help more at-risk children and their families — because Every Kid Deserves to Grow Up®. 
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  &lt;a href="https://solvingkidscancer.org/blog/childhood-cancer-predisposition-syndromes/?rbref=https://solvingkidscancer.rallybound.org/donate2skc/Donate&amp;amp;utm_campaign=CTA&amp;amp;utm_source=https://secure.solvingkidscancer.org/forms/donatenow&amp;amp;utm_medium=General&amp;amp;utm_content=" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/BUTTON-2-768x192.png" alt="A pink button that says `` help fund our research '' on a white background."/&gt;&#xD;
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      <pubDate>Fri, 19 Aug 2022 09:06:27 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/childhood-cancer-predisposition-syndromes</guid>
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      <title>September Childhood Cancer Awareness Month: Lace Up for Kids 2022</title>
      <link>https://www.solvingkidscancer.org/lace-up-for-kids-2022</link>
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           Each year, more than 400,000 children around the world are diagnosed with cancer; however, advancements in care and treatment have, in many cases, not changed in decades. That’s why we’re determined to change the future for kids with cancer and their families. 
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           Join us this September for Childhood Cancer Awareness Month, as we all shine a light on the realities of childhood cancer and emphasize the importance of life-saving research through the Solving Kids’ Cancer Lace Up For Kids Program! To explore more about the initiatives, success stories, and ways to contribute, you can find weitere Infos dazu hier, which provides a comprehensive overview of the program’s impact and future goals. Together, we can make a meaningful difference in the fight against childhood cancer.
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           All you have to do is go gold for childhood cancer, and swap your white laces for our Solving Kids’ Cancer gold shoelaces while you work to raise awareness and fundraise for pediatric cancer.
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           Laces by the Numbers
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           Launched in 2017, the Lace Up for Kids program has participants from all 50 U.S. states and is celebrated worldwide — thanks to the power of our supporters, social media, and some awesome gold shoelaces. Here’s a glimpse at last year’s success. 
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           2021 Stats
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           Last year was an incredible year for Lace Up for Kids, and we’re looking forward to another successful year in 2022. Here are some of the highlights from last year’s program: 
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            26,000 pairs of laces worn
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            24,000+ participants
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            Participants from all 50 U.S. states 
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            Participants from 6 countries around the world 
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            Over $90,000 raised!
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           How To Participate in Lace Up for Kids 2022
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           It’s easy to participate in the Lace Up for Kids program. Here’s how to get started.
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            C
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            are:
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            Register for Lace Up for Kids to show you care about childhood cancer and create your fundraising page. It’s quick and easy! 
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            Wear:
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             Keep an eye on your mailbox because your laces are on the way! Once they arrive, swap out your regular laces for the gold ones this September and GO GOLD for kids!
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            Share:
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             Spread the wo
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            rd about your fundraiser and ask your friends and family to support your efforts! Also, don’t forget to share your unique fundraising campaign link on social media along with #CareWearShare.
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           Other Ways to Get Involved
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           There are many ways to get involved in the Lace Up for Kids program. Here are a few fun ways supporters take it to the next level: 
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            Register as a team captain and ask friends and family to join you in fundraising!
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            Get your sports team to go gold for childhood cancer and order laces in bulk. We’ve seen baseball, basketball, cheer, and football teams participate.
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            Get your entire school involved and host an informational table sharing more about September Childhood Cancer Awareness Month and the Lace Up for Kids program.
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            Take your laces wherever you go! Just don’t forget to take a picture and post it to your social channels asking your friends and family to help you fundraise.
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           A Message From a Cancer Mom &amp;amp; Childhood Cancer Advocate
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-6025ead2.jpg" alt="A woman in a black jacket is holding a basket of gold tinsel."/&gt;&#xD;
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           While Lace Up For Kids is a Nationwide awareness campaign, its strength comes from all of the individual communities rallying behind children fighting cancer. 
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           Our first local Lace Up for Kids campaign on Long Island, NY, was in 2018 with a single girls’ U9 soccer team. In our 5th year, “Smithtown Goes Gold” is now a town-wide and school district-wide event — and a simple way to honor kids (and families) fighting cancer.
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           Table covered in red tablecloth with gold shoelaces and a banner saying "Childhood Cancer Awareness" 
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           I first got involved with Solving Kids’ Cancer to honor my son’s journey. Together we are committed to continuing to raise awareness and research funds to accelerate innovative treatments and potential cures for the most difficult to treat pediatric cancers. Join us and swap out your shoelaces to #GoGold!
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           -Amy B., cancer mom &amp;amp; advocate 
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           Ready to Join Us?
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           Together, let’s make a GOLD statement during September Childhood Cancer Awareness Month and show the world that we’re dedicated to supporting childhood cancer patients and their families and finding new and innovative treatment options — because Every Kid Deserves to Grow Up®. 
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      <pubDate>Wed, 27 Jul 2022 14:52:10 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/lace-up-for-kids-2022</guid>
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    <item>
      <title>ETMR Brain Cancer: Advancing Treatment Protocol</title>
      <link>https://www.solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol</link>
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           Embryonal tumor with multilayered rosettes (ETMR) attacks the youngest, most vulnerable patients — infants. In fact, 92% of patients affected by ETMR brain cancer are under the age of three at diagnosis. For the first time, experts are addressing the challenges of ETMR and developing the first treatment protocol with international collaboration. 
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           This article covers the basics of ETMR, what advancements in treatment mean for childhood cancer patients, and Solving Kids’ Cancer’s role in propelling new treatment options and research forward. 
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           What Is an Embryonal Tumor With Multilayered Rosettes?
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           An ETMR brain tumor is one of the most aggressive pediatric brain tumors (grade IV), and a relatively new entity in the world of childhood cancer — recognized by scientists as a distinct tumor type in recent years. This particular type of brain tumor is embryonal, which originates from the fetal (embryonic) cells in the brain. Embryonal tumors can occur at any age, but most often occur in babies and young children. ETMR brain cancer typically originates in the cerebellum — an area of the brain that regulates a person’s balance and sense of equilibrium.
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           According to the 
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           National Library of Medicine
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           , “All ETMRs, despite their highly heterogeneous histology, are characterized by specific high expression of the RNA-binding protein LIN28A, which is, therefore, often used as a diagnostic marker for these tumors. This tumor type affects as many males as females, and the 5-year survival rate is anywhere from 0-30%.
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           Symptoms &amp;amp; Causes of ETMR Brain Cancer
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           Symptoms of an embryonal tumor with multilayered rosettes are different for each patient depending on various factors such as how advanced tumor growth is, location and whether or not the tumor is causing increased intracranial pressure (ICP). 
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           Like 
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           medulloblastoma
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           , ETMRs can block the flow of cerebrospinal fluid (CSF), resulting in hydrocephalus, an over-accumulation of fluid in the brain’s ventricles, and ICP. ETMR symptoms can include: 
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                • Seizures
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                • Headaches
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                • Nausea and vomiting 
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                • Increased lethargy
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                • Weakness in the arms and legs
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                • Facial weakness and drooping
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                • Changes in vision/eye movements (double or blurred vision and uncontrolled movements) 
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                • Issues with balance, coordination or walking
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                • Twisting of the neck (resulting in involuntary head tilting) 
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           The exact cause of this pediatric cancer is unknown. Still, research shows that “Since the discovery of the 
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           characteristic chromosome 19 miRNA cluster (C19MC)
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            amplification over a decade ago, the methods for diagnosing this entity have improved and many new insights in the molecular landscape of ETMRs have been acquired.”
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           Diagnosis of ETMR Brain Cancer
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           ETMRs are extremely rare — so much so that few statistics around the number of cases each year exist. This type of brain tumor is typically diagnosed through: 
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                • Magnetic resonance imaging (MRI) 
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                • Computed tomography scan (CT scan)
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                • Surgery or biopsy to determine pathology and genomics
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           Scans are non-invasive and allow doctors to collect detailed images of the brain and other areas such as the spinal cord to determine the next steps for treatment. Surgery or biopsy to examine the tissue is a necessary part of the diagnostic process.
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           In general, treatment consists of surgery, radiotherapy, and chemotherapy.
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           Here is the story of how one young patient was diagnosed with ETMR.
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           Addie’s ETMR Treatment Journey
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           Addie was just four months old when her worrisome symptoms first appeared. She was sleeping more than usual and vomiting. After multiple visits to the doctor over the next month, her symptoms became more severe. Finally, an ER doctor ordered a CT scan, and they immediately recognized Addie had a brain tumor. 
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            ﻿
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           A few days later, Addie had surgery, and after three painstakingly long weeks, her parents, Brian and Vanessa, received their daughter’s diagnosis: ETMR and Addie’s prognosis was grim. 
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           Addie’s parents were facing two harsh realities: Their daughter’s poor prognosis and a total lack of treatment protocol for this type of brain cancer. But still, Addie’s parents held on to their hope and remained determined to save their daughter. 
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           Dr. Derek Hanson, M.D., Section Chief, Pediatric Neuro-Oncology, Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center was Addie’s doctor. He quickly got to work connecting to peers who had experience with treating ETMRs. Additionally, he spent numerous hours studying case histories to develop a plan of action for Addie. 
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           While Dr. Hanson was conducting his research, Addie’s parents were also connecting with ETMR families around the world — getting information and advice on each course of treatment, the ups and downs of the diagnosis, new ideas and what didn’t work. All of this influenced Dr. Hanson’s treatment recommendation. In many ways, navigating Addie’s diagnosis was like crowdsourcing for cancer treatment. 
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           For eight months, Addie underwent numerous courses of chemotherapy, surgeries to resect her tumor and an autologous peripheral blood cell transplant — which are the existing ETMR treatment options. Due to her young age she did not have radiotherapy to avoid the severe long-term effects.
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           Addie is now 6 years old and enjoying school. She continues to have follow-up care to evaluate any possible long-term side effects of her treatment.
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           Advancing Treatment Protocols
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           Patients like Addie profoundly impacted Dr. Hanson, and over a few short years, he has become a leader in ETMR treatment. In fact, in 2019, he convened a congress of brain tumor experts to address the challenges of this pediatric brain tumor and has now developed the first treatment protocol with international collaboration. 
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           This trial is described in the article titled, “
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    &lt;a href="https://academic.oup.com/neuro-oncology/article/22/Supplement_3/iii324/6018937" target="_blank"&gt;&#xD;
      
           ETMR -08. International Consensus Protocol For Embryonal Tumor With Multilayer Rosettes
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           ,” published in Society for Neuro-Oncology, “A consensus protocol was developed incorporating maximal safe surgical resection, induction chemotherapy with active pre-clinical agents, intrathecal chemotherapy, radiotherapy, and high-dose chemotherapy.” 
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           This international consensus was a significant stride in establishing a clinical trial to study and treat ETMRs. Dr. Hanson designed this innovative trial to treat each subset of ETMR best. It will be conducted by an international brain tumor consortium, making it available to children worldwide. 
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           This pioneering program also includes a robust data registry so research can advance at a more rapid pace to find a cure. The clinical trial will be the first of its kind to treat this deadly brain tumor with new cancer drugs, and researchers will use the information and data collected in this inaugural trial to compare the outcomes of subsequent trials.
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           Solving Kids’ Cancer’s Role in Propelling ETMR Brain Cancer
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           Treatment Options &amp;amp; Research
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           Brain cancer is the leading cause of cancer death among pediatric patients. Despite significant improvements in outcomes for some 
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           rare pediatric cancers
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           , when current treatments such as chemotherapy, surgery, or radiation fail, there is still an unacceptably low chance of survival for some brain cancers. 
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           At Solving Kids’ Cancer, we prioritize and fund innovative preclinical research and early phase clinical trials with a strong rationale for potential benefit to children with poor prognosis cancers — like embryonal tumors with multilayered rosettes. 
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           Over the past decade, we have funded multiple clinical trials to study a variety of pediatric brain tumors. Our team is excited to work with determined ETMR families and Dr. Hanson to launch the clinical trial to ensure all families have a structured treatment protocol — instead of having to use ad-hoc treatment in the hope of a cure. 
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           But our work doesn’t stop with this clinical trial. With a focus on innovative treatments like immunotherapy and access to a global network of top research scientists and medical doctors. As a result, we believe it is possible to find a cure for rare pediatric brain tumors like ETMRs.
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           Help us increase awareness and funding for the treatment of ETMRs, so we can develop new, more effective treatment options for children facing the most deadly brain tumors. 
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    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_etmr_cancer_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_etmr_cancer_1&amp;amp;utm_medium=blog&amp;amp;utm_content=etmr_advancing_treatments_cta_1" target="_blank"&gt;&#xD;
      
           Your gift to Solving Kids’ Cancer
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    &lt;span&gt;&#xD;
      
            will provide hope for these small patients — because Every Kid Deserves to Grow Up®. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_etmr_cancer_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_etmr_cancer_2&amp;amp;utm_medium=blog&amp;amp;utm_content=etmr_advancing_treatments_cta_2" target="_blank"&gt;&#xD;
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      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Addie-2-768x1024.jpg" length="100642" type="image/jpeg" />
      <pubDate>Thu, 30 Jun 2022 09:12:35 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/etmr-brain-cancer-advancing-treatment-protocol</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/ETMR+Brain+Tumor.hanson.png">
        <media:description>thumbnail</media:description>
      </media:content>
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        <media:description>main image</media:description>
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    </item>
    <item>
      <title>Childhood Medulloblastoma Cancer</title>
      <link>https://www.solvingkidscancer.org/blog/medulloblastoma-in-children</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           What is Medulloblastoma Cancer?
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           Medulloblastoma cancer is an aggressive brain tumor that originates in the brain’s cerebellum — an area that regulates a person’s balance and sense of equilibrium. According to the 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/books/NBK431069/" target="_blank"&gt;&#xD;
      
           National Library of Medicine
          &#xD;
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           , “Medulloblastoma is the most common malignant brain tumor in children, constituting nearly 20% of all pediatric brain tumors.”1  While this type of tumor can occur in adults, it typically affects more children — with approximately 350-500 diagnosed each year in the United States.2 
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           Medulloblastoma Cancer Symptoms, Causes, and Risk Factors
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           Medulloblastoma cancer symptoms can present gradually or abruptly depending on how advanced the tumor growth is. In some cases, the tumor may spread to the patient’s spinal cord via cerebral spinal fluid (CSF), affecting the central nervous system. 
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           In cases where the tumor blocks the flow of CSF, it can result in hydrocephalus, an over-accumulation of CSF in the ventricles of the brain (parts of the brain where CSF flows). This fluid build-up causes intracranial pressure. Signs of a brain tumor can include:
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              •
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            Headaches 
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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              •
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            Seizures 
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              •
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            Changes in balance
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              •
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            Tripping (due to a change in gait)
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              •
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            Frequent falling
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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              •
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            Issues with vision
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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              •
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            Lethargy
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              •
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            Vomiting
           &#xD;
      &lt;br/&gt;&#xD;
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              •
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            Nausea
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
              •
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Incontinence 
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
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              •
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            Cognitive changes 
           &#xD;
      &lt;br/&gt;&#xD;
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              •
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            Behavior changes
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&lt;div data-rss-type="text"&gt;&#xD;
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           Medulloblastoma pediatric brain tumors are considered embryonal neuroepithelial, meaning they grow from a patient’s cells when they are in utero. Typically, these cells are not harmful, but they can become malignant in a handful of cases. 
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The exact cause of this pediatric brain cancer is unknown, but research suggests that 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/childhood-cancer-predisposition-syndromes/" target="_blank"&gt;&#xD;
      
           genetic factors may play a role
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    &lt;span&gt;&#xD;
      
           . Cedars Sinai reports that “A small number of people with medulloblastoma also have certain inherited disorders. These disorders increase their risk of getting these tumors, as well as other types of cancer.”3 The disorders include:
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Gorlin syndrome
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
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    &lt;span&gt;&#xD;
      
            Turcot syndrome
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    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Gardner syndrome
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
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            Li-Fraumeni syndrome
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Diagnosis of Medulloblastoma Childhood Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           If someone is experiencing any of the signs of pediatric brain tumors mentioned above, it’s important to see a doctor for further evaluation. This type of pediatric brain tumor is typically diagnosed through: 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
              •
          &#xD;
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    &lt;span&gt;&#xD;
      
            Magnetic resonance imaging (MRI) 
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    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Computed tomography scan (CT scan)
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           These methods are non-invasive and allow doctors to collect detailed images of the brain and spinal cord to determine a course of treatment. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Pediatric Cancer Medulloblastoma Treatment &amp;amp; Prognosis
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Doctors typically perform surgery to remove as much of the pediatric brain tumor as possible. Once the surgery is complete, the tumor will be examined to determine its pathology. There are three subgroups of medulloblastoma cancer that ultimately determine the specific course of treatment. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            The subgroups are as defined in a study published by the American Society for Clinical Oncology called “WNT-Activated Medulloblastomas With Hybrid Molecular Subtypes”4 quoted below: 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Wingless Type (WNT) Subgroup
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
              • Long-term prognosis: 
          &#xD;
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    &lt;span&gt;&#xD;
      
           Good (in fact, the best out of all the subgroups) 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            “Defined by activating mutations in the WNT/β-catenin signaling pathway (eg, CTNNB1 or germline APC), and are often associated with loss of chromosome 6.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Sonic Hedgehog (SHH) Subgroup
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
              • Long-term prognosis: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Greater rates of survival are recorded in infants and depending on the age of diagnosis, the prognosis worsens. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            “Denoted by mutations in the Sonic Hedgehog (SHH) pathway, with intermediate or poor prognosis guided by TP53 status.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Groups 3 &amp;amp; 4 (Combined Non-WNT/Non-SHH)
          &#xD;
    &lt;/strong&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
              • Long-term prognosis:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Group 3 typically has a poor prognosis, while Group 4 has a similar prognosis to the SHH subgroup.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            “G3 and G4 medulloblastomas are associated with MYC amplification and MYCN or CDK6 amplification, and frequently harbor isochromosome 17q.”
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
              •
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            The World Health Organization (WHO) combined Groups 3 and 4 into one subgroup in 2016, “Due to common genetic abnormalities,” as outlined in a study published by Anticancer Research.5
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/proton+release.jpg" alt="A woman is standing in front of an x-ray machine"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           SOURCE: Penn Medicine News
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           In addition to surgical intervention, patients usually undergo chemotherapy and radiation. Doctors may also target the spinal cord or other affected areas with radiation depending on metastasis. While radiation is part of the standard treatment protocol for this type of pediatric brain tumor, the acute toxicity of treatment to the brain, in particular, can cause lasting damage. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           One of the newer and safer treatments for medulloblastoma cancer in children is proton therapy. Pediatric cancer medulloblastoma patients who received proton therapy had better long-term survival rates than those who underwent traditional chemotherapy and radiation. Proton beam therapy allows for the safe delivery of positively charged protons to the tumor site with minimal radiation side effects and damage to surrounding tissue.6
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Each medulloblastoma childhood cancer prognosis varies from case to case. However, if treated early and aggressively, and the tumor has not spread to other areas, about 70% of [patients] diagnosed with medulloblastoma are still alive five years later.7 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Solving Kids’ Cancer’s Role in Brain Cancer Awareness &amp;amp; Research 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Brain cancer is the leading cause of cancer death among pediatric patients. Despite significant improvements in outcomes for some 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/role-impact/" target="_blank"&gt;&#xD;
      
           rare pediatric cancers
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , when current treatments such as chemotherapy, surgery, or radiation fail, there is still an unacceptably low chance of survival for some brain cancers. This is mainly due to more aggressive pediatric brain tumors and insufficient research and funding. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Continued 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/skc-funded-projects/#fl-accordion-600085ea3c35d-tab-1" target="_blank"&gt;&#xD;
      
           clinical research of medulloblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            helps scientists study the behavior and biology of this pediatric brain tumor and examine the efficacy of new drugs, those traditionally used for other diseases, and rational combinations. More recent studies include:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            An examination of medulloblastoma’s diverse biological subtypes to improve risk prediction and personalize treatment strategies.8 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Discoveries of the environment around the tumor that is leading to better-targeted treatments for medulloblastoma.9
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            By investing in innovative, new experimental treatments for children, Solving Kids’ Cancer is dedicated to improving long-term survivorship and increasing brain cancer awareness. 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When you 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_medulloblastoma_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_medulloblastoma_1&amp;amp;utm_medium=blog&amp;amp;utm_content=medulloblastoma_cta_1" target="_blank"&gt;&#xD;
      
           make a gift
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to Solving Kids’ Cancer, you provide hope to children and their families searching for a cure for rare brain cancers like medulloblastoma cancer — because every kid deserves to grow up®.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_medulloblastoma_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_medulloblastoma_2&amp;amp;utm_medium=blog&amp;amp;utm_content=medulloblastoma_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/BUTTON-2-768x192+%281%29.png" alt="A pink button that says `` help fund our research '' on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Medulloblastoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/books/NBK431069/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/books/NBK431069/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 An oncolytic measles virus–sensitive Group 3 medulloblastoma model in immune-competent mice – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://academic.oup.com/neuro-oncology/article/20/12/1606/5038008" target="_blank"&gt;&#xD;
      
           https://academic.oup.com/neuro-oncology/article/20/12/1606/5038008
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 Medulloblastoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.cedars-sinai.org/health-library/diseases-and-conditions/m/medulloblastoma.html" target="_blank"&gt;&#xD;
      
           https://www.cedars-sinai.org/health-library/diseases-and-conditions/m/medulloblastoma.html
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4 WNT-Activated Medulloblastomas With Hybrid Molecular Subtypes – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://ascopubs.org/doi/full/10.1200/PO.19.00332" target="_blank"&gt;&#xD;
      
           https://ascopubs.org/doi/full/10.1200/PO.19.00332
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           5 Molecular Stratification of Medulloblastoma: Clinical Outcomes and Therapeutic Interventions – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://ar.iiarjournals.org/content/42/5/2225.long#sec-4" target="_blank"&gt;&#xD;
      
           https://ar.iiarjournals.org/content/42/5/2225.long#sec-4
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           6 Two Studies Show Promise, Safety of Proton Therapy in the Brain in Children with Cancer – 
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    &lt;a href="https://www.pennmedicine.org/news/news-releases/2019/september/two-studies-show-promise-safety-of-proton-therapy-in-the-brain-in-children-with-cancer" target="_blank"&gt;&#xD;
      
           https://www.pennmedicine.org/news/news-releases/2019/september/two-studies-show-promise-safety-of-proton-therapy-in-the-brain-in-children-with-cancer
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           7 Medulloblastoma – 
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    &lt;a href="https://my.clevelandclinic.org/health/diseases/22591-medulloblastoma" target="_blank"&gt;&#xD;
      
           https://my.clevelandclinic.org/health/diseases/22591-medulloblastoma
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           8 Medulloblastoma: Current Perspectives and Recent Advances – 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9911713/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9911713/
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           9 Epigenetics and immune cells in medulloblastoma – 
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    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/36968588/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/36968588/
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&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-17-768x548.png" length="682978" type="image/png" />
      <pubDate>Wed, 08 Jun 2022 11:55:07 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/medulloblastoma-in-children</guid>
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      <title>A Neuroblastoma Journey: From Diagnosis to MiNivAn Trial</title>
      <link>https://www.solvingkidscancer.org/blog/poppys-journey</link>
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           Poppy was just shy of her fifth birthday when she started experiencing pain in her legs, increasing lethargy and a diminished appetite. As her leg pain worsened, her mother called Poppy’s primary care provider to request an appointment. The doctor ran blood tests and sent the family home. Days later, Poppy’s mom, Claire, received a phone call from the doctor explaining that Poppy’s results were alarming and they needed to return to the doctor’s office immediately. 
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           That day, everything changed. 
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           Poppy was sent to see a pediatrician in Bedford, a nearby town in England, where she lives with her mom, dad, and little brother. The hospital ran a slew of tests and imaging — finally revealing a large tumor at the back left-hand side of Poppy’s chest cavity. It was wrapped around her heart and pushing against her lung. Poppy was officially diagnosed with stage IV high-risk neuroblastoma.
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           “I remember she was diagnosed on a Friday, and the doctors said, because she had quite a lot of metastatic disease, they wanted to get started with treatment right away. They said, ‘We don’t normally start treatment on the weekends, but we have no time to lose,'” said Claire.
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           Fresh &amp;amp; Easy Fundraising Ideas for 2024
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           The Initial Treatment for Poppy’s Neuroblastoma
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           That Saturday, Poppy started rapid COJEC induction chemotherapy — the “cycled administration of the chemotherapeutics cisplatin, vincristine, etoposide, cyclophosphamide and carboplatin” — and the standard protocol for neuroblastoma treatment in Europe. Poppy underwent eight cycles of treatment, every 10 days, in the fight of her life. 
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           As Poppy’s mom described, “It was very intense. The doctors told me that Poppy coped well, but I thought she was quite sick during the treatment.”
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            ﻿
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           At the halfway point of Poppy’s initial treatment, urine tests that measure for the levels of VMA (vanillylmandelic acid) and HVA (homovanillic acid), two metabolites that are excreted from tumors like neuroblastoma, and computed tomography (CT) scans showed that Poppy’s body was responding well to treatment. 
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           “When we got to the end of treatment, it hadn’t done as much as we thought. But when you look at the big picture and how much metastasis Poppy had, I’d estimate we got rid of about 70%,” said Claire. 
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           But Poppy wasn’t ready to move on to the next stages of treatment and instead doctors recommended that she undergo two rounds of topotecan and cyclophosphamide in outpatient chemotherapy.
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           Claire explained, “When she had her scans, it hadn’t done much, so the nuclear radiologist suggested we do another two rounds. Again, it didn’t do much, but Poppy remained stable.” 
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           While Poppy’s family was waiting for her blood counts to recover, Poppy had an ovary removed — a common method of 
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    &lt;a href="https://solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors/" target="_blank"&gt;&#xD;
      
           fertility preservation for cancer patients
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           . And once she was well enough to resume treatment, she started two rounds of IT (irinotecan and temozolomide) chemotherapy. Irinotecan is administered intravenously, while temozolomide is an oral chemo. 
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           Shortly after that treatment ended, Poppy’s mother received a phone call about a potentially life-saving clinical trial to treat neuroblastoma — called the 
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    &lt;a href="https://clinicaltrials.gov/ct2/show/NCT02914405" target="_blank"&gt;&#xD;
      
           MiNivAn
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            trial. 
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           Newfound Hope for Poppy With the MiNivAn Trial
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           Neuroblastoma cancer has a high relapse rate (over 50% in high-risk cases, like Poppy’s), and after relapse, fewer than 10% of children remain alive after five years. After Poppy’s initial treatment, her disease was categorized as refractory, meaning it was no longer responding to chemotherapy. In order for Poppy to move on to high-dose chemo and an autologous peripheral blood cell transplant, she needed to have a SIOPEN score, which 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5747549/#:~:text=Briefly%2C%20the%20SIOPEN%20method%20scores,nuclear%20medicine%20physicians%20%5B13%5D." target="_blank"&gt;&#xD;
      
           scores the amount of disease across 12 body segments
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           , of 3 or less (Poppy’s was 33). 
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           But for families like Poppy’s who have exhausted their options, there is newfound hope in the MiNivAn clinical trial at the University Hospital at Southampton. 
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           Helmed by Dr. Juliet Gray, Associate Professor and Consultant in Pediatric Oncology, the clinical trial is testing the safety and efficacy of a combination of three drugs in relapsed or refractory neuroblastoma. Two treatments of targeted radiotherapy I-131 meta-iodobenzylguanidine (MIBG), followed by five cycles of a combination of two antibodies, anti-GD2 (ch14.18/CHO or dinutuximab-beta) and anti-PD1 (nivolumab). Laboratory studies show that this combination could be effective in eradicating tumors.
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           Poppy received the last spot in the second cohort for the MiNivAn trial at Southampton and another chance at recovery. “Our doctors told us we don’t know how long it will be until the next cohort, so it’s now or never,” said Claire.
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           How the MiNivAn Trial Works
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           The MiNivAn clinical trial consists of patient cohorts that undergo a combination of inpatient and outpatient treatments for 30 weeks. Cancer Research UK 
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    &lt;a href="https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-of-mibg-nivolumab-and-dinutuximab-beta-for-neuroblastoma-minivan#undefined" target="_blank"&gt;&#xD;
      
           outlines the MiNivAn trial design
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            as follows: 
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              • 
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           Three cohorts consisting of patients who receive: 
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                 ○ Cohort 1: 
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           MIBG and nivolumab
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                 ○ Cohort 2:
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            MIBG, nivolumab, and a low dose of dinutuximab beta 
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                 ○ Cohort 3: 
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           MIBG, nivolumab, and a full dose of dinutuximab beta
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              • Cohort 1:
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            Undergoes two MIBG treatments, two weeks apart. Two weeks after the last MIBG treatment, patients start nivolumab (anti-PD1) every two weeks for 30 weeks to treat
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               the neuroblastoma. 
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           During the MIBG therapy, Poppy had to isolate herself along with her family for two weeks. Patients can expect to do the same and will have to remain in the MIBG room due to the highly radioactive nature of the treatment. 
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              • Cohorts 2 &amp;amp; 3: 
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           Undergo two MIBG treatments, two weeks apart. Two weeks after the last MIBG treatment, patients start nivolumab (anti-PD1) every two weeks for 30 weeks.
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               Additionally, these cohorts start dinutuximab beta (anti-GD2 ch14.18/CHO) continuously for ten days beginning one day after starting nivolumab, and have it every six weeks for 30
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               weeks.
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           During the MiNivAn trial, patients will either receive inpatient or outpatient care: 
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              • Inpatient
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            for initial MIBG therapy
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              • Outpatient
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            for nivolumab 
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              • Inpatient
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            for dinutuximab beta for the initial two treatments, then patients can finish subsequent treatments at home if their side effects are manageable. Therapeutics are
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               delivered via a small pump connected to a central line. 
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           Poppy’s Response to the MiNivAn Trial
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           While every neuroblastoma patient undergoing MiNivAn treatment will respond differently, Poppy’s mother reports that the therapy was well-received overall. 
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           “It’s important to say that the MiNivAn trial was brilliant for Poppy — and all of us, really. When you’ve been stuck in a hospital with no visits, having horrendous chemo with the most terrible side effects, everyone can feel quite down.” 
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           And as Poppy’s mom went on to explain, the preliminary MIBG therapy was not as bad as she thought it would be, stating, “There weren’t really any side effects, and the isolation wasn’t as bad as I anticipated. I was very close to her and could see her all the time.” 
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           The minimal side effects continued with the immunotherapy. While Poppy did experience fevers with the dinutuximab treatment, she had little to no pain. In fact, during Poppy’s outpatient treatment for neuroblastoma, she and her family would go sightseeing, play at the parks and visit the zoo. The family stayed nearby at a 
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    &lt;a href="https://www.younglivesvscancer.org.uk/what-we-do/a-free-place-to-stay/" target="_blank"&gt;&#xD;
      
           Young Lives vs Cancer Home from Home
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            — which offers cancer patients and their families a place to stay while receiving cancer treatment. 
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           Eventually, Poppy was able to go back to school and enjoy the carefree moments that a child her age should — without the debilitating side effects many children experience undergoing toxic treatment for neuroblastoma. “It almost felt like we were living quite a normal life. In my mind, the trial will always be a happy memory for us,” said Claire. 
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-1-768x1024.jpg" alt="A little girl in a yellow dress is sitting on a tree stump."/&gt;&#xD;
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           Poppy’s scans showed that she had 33 spots at the beginning of the trial. “I had never heard that number before, and I was quite shocked at how many there were,” explained Claire.
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           But several months into the trial, Poppy’s new scans demonstrated that treatment was working in her favor. As her mom reported, “The doctors had gotten down to nine spots, so we were pleased it was going in the right direction. My mom, Poppy’s grandmother, said, ‘quite simply, the trial saved Poppy’s life.'”
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           Since finishing the MiNivAn trial, Poppy completed one more round of IT chemotherapy as holding chemo while she waited to have surgery for the primary tumor in her chest in December 2021. 
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           After surgery, Poppy’s frontline treatment for her neuroblastoma continued with high-dose chemotherapy and autologous peripheral blood cell transplant, followed by radiation every weekday for three weeks. Then, just this May, Poppy started receiving additional immunotherapy with double the dose of dinutuximab beta (the same drug from the MiNivAn trial) in conjunction with isotretinoin (cisRA) — a vitamin A derivative. And for the next six months, Poppy will receive immunotherapy for 10 days every month.
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           Nothing about Poppy’s journey has been easy, but considering all she’s been through, her cognitive and physical abilities are fully intact, her weight is on track for a child her age, and her overall health remains stable. 
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           But as Poppy gets older, her mom said, “Poppy’s starting to question things a bit more, and it’s getting harder to keep up my morale as a parent in the midst of this battle.” 
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           Questions aside, Poppy is still the bright, funny, and talkative little girl her family knows so well. And after almost two years of cancer treatment for neuroblastoma, hope remains — because it has to. Because as Poppy’s mom said, “There is nothing you wouldn’t do to save your child.” 
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           How to Support Trials Like MiNivAn
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           The impact of childhood cancer is pervasive. It’s a part of every moment of every day. It’s a burden that parents like Poppy’s shoulder, hoping that their child will overcome this cruel disease one day.
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           At Solving Kids’ Cancer, we prioritize and fund innovative preclinical research and early phase clinical trials with a strong rationale for potential benefit to children with poor prognostic cancers — like high-risk neuroblastoma. 
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           We are proud of the collective work we have achieved alongside other nonprofit organizations to help fund 
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           Poppy’s MiNivAn trial
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            in England and Greifswald University Medicine in Germany and the University of Wisconsin-Madison’s American Family Children’s Hospital in the United States. 
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           But clinical trials need funding in order to continue. In fact, the 
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           American Society of Clinical Oncology
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            reported that “Additional investment to strengthen the conduct of trials funded by nonprofit organizations is essential.” They also highlight two key challenges that have to be overcome in order to realize long-term, mainstream treatment options for children with neuroblastoma:
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              • Significant clinical trials have to continue 
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              • The clinical trials have to lead to regulatory and reimbursement approvals — this will help establish successful clinical trial treatments as new standards of care throughout national
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               healthcare systems
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           When you 
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    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_minivan_trial_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_minivan_trial_1&amp;amp;utm_medium=blog&amp;amp;utm_content=minivan_cta_1" target="_blank"&gt;&#xD;
      
           give to Solving Kids’ Cancer
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           , you help support the development of more effective treatment options for children facing pediatric cancer like neuroblastoma and provide patients with another chance at discovering a life-saving cure — because Every Kid Deserves to Grow Up®. 
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      <pubDate>Thu, 26 May 2022 12:35:55 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/poppys-journey</guid>
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      <title>Advancing DIPG Cancer Research &amp; What It Means for Patients</title>
      <link>https://www.solvingkidscancer.org/blog/advancing-dipg-cancer-research</link>
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           Diffuse intrinsic pontine glioma (DIPG) tumors are extremely difficult to treat due to their anatomical location. But advancements in research and greater DIPG awareness are leading to more hope for patients with this type of 
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           rare pediatric brain tumor
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           . This article covers the basics of DIPG cancer, what advancements in research mean for patients, and Solving Kids’ Cancer’s role in finding a cure. 
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           What is DIPG Cancer?
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           A DIPG tumor is a walnut-sized, aggressive, and malignant brain tumor located in the pons (middle of the brainstem). The pons is a delicate structure responsible for various functions, primarily the regulation of the autonomic nervous system — which is divided into the sympathetic and parasympathetic nervous systems.
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           The sympathetic nervous system is responsible for a person’s fight or flight response, while the parasympathetic nervous system controls the rest and digest functions of the body. The pons also regulates the reticular activating system, which controls a person’s wakefulness and sleep cycle, pain response, and fight or flight response, as part of the sympathetic nervous system. Additional sensory and motor functions of the face and eyes stem from cranial nerves located at the level of the pons. 
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           Dr. Derek Hanson, M.D., Section Chief, Pediatric Neuro-Oncology, Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center was Addie’s doctor. He quickly got to work connecting to peers who had experience with treating ETMRs. Additionally, he spent numerous hours studying case histories to develop a plan of action for Addie. 
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           Signs &amp;amp; Symptoms of a DIPG Tumor
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           A DIPG tumor moves quickly, and signs and symptoms of the tumor are typically present before an official diagnosis. DIPG signs and symptoms can include but are not limited to:
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           • Weakness in the arms and legs
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           • Facial weakness and drooping
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           • Changes in vision/eye movements (double or blurred vision and uncontrolled movements)
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           • Problems with chewing and swallowing
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           • Issues with balance, coordination, or walking
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           • Headaches (particularly in the morning) or that subside after vomiting
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           • Nausea and vomiting
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           • Changes in behavior or personality (irritability, aggravation, and anxiety) 
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           Diagnosis of a DIPG Tumor
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           DIPG cancer is very rare, affecting about 300 children in the United States per year. Due to the aggressive nature of this tumor, most patients are usually Grade III or IV before they receive a diagnosis. And, out of the total number of children diagnosed with a brain tumor each year, about 10 to 20 percent are DIPG. While this type of tumor generally affects children aged five to ten years old, it can occur in older children, though this is rare. 
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           To officially diagnose a child with DIPG cancer, doctors will recommend they undergo medical imaging such as a computed tomography scan (CT scan) or magnetic resonance imaging (MRI) to determine the exact location of the tumor within the brain and its size. 
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           Doctors may also recommend that a child undergo 
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    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4723643/" target="_blank"&gt;&#xD;
      
           magnetic resonance (MR) spectroscopy
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           , which “provides a non-invasive ‘window’ on biochemical processes within the body” or, more specifically, the brain of a patient who may have DIPG cancer. Doctors may also biopsy the tumor as part of their diagnostic process. 
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           Existing Treatment Options for DIPG Cancer
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           Due to the tumor location in the pons region of the brain, surgical intervention is not possible without the significant risk of damaging critical parts of the brainstem. Therefore, the only existing treatment options include chemotherapy and radiation. 
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           In terms of chemotherapy treatment, any oral or intravenous treatments must cross the blood-brain barrier, which only allows a small fraction of therapy to enter the brain and get to the tumor site. Additionally, any drugs introduced to the body to fight the tumor are usually administered in such high doses that debilitating side effects occur, greatly affecting a patient’s quality of life. 
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           Radiation is one of the only effective treatments to shrink DIPG tumors in children older than three years. And while some oncologists use chemotherapy treatment in conjunction with radiation, there is still little evidence to support that it increases the overall survival rate. 
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           Whether children receive chemotherapy, radiation, or both, the life expectancy of a child with a diffuse intrinsic pontine glioma is typically less than a year. 
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           Advancements in Treatment for a DIPG Tumor 
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           While the prognosis for DIPG cancer remains poor with traditional treatment modalities, there have been advancements in treatment through clinical trials that provide newfound hope for a better future for patients. 
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           Innovative Treatment Delivery for DIPG Cancer
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           Dr. Mark Souweidane, MD, Director of Pediatric Neurosurgery, Weill Cornell Medicine and New York-Presbyterian and Memorial Sloan-Kettering Cancer Center, is pioneering DIPG cancer research and treatment to find a cure for this deadly childhood brain tumor. 
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           When leadership from Solving Kids’ Cancer reviewed Dr. Souweidane’s original research proposal, it was exciting to see his application of convection enhanced delivery (CED), a procedure used to bypass the blood-brain barrier to deliver a therapeutic agent directly into the tumor via a 
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           surgically placed infusion cannula
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           . This method first proved beneficial in neuroblastoma patients who had relapse to the brain — providing insight that it could also be applied to patients with DIPG cancer. 
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           Solving Kids’ Cancer was instrumental in bringing Dr. Souweidane’s innovative concept of DIPG treatment to patients by helping 
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           fund his breakthrough clinical trial
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           . The phase 1 clinical trial of CED had promising results. Not only was the procedure itself effective, but the amount of therapeutic agent delivered to the DIPG was 1,200 times greater than a whole-body dose as with chemotherapy. 
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           In 2019, Dr. Souweidane presented an update on his clinical trial at the American Society of Clinical Oncology (ASCO) meeting. Again, the 
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           findings were compelling
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            and showed “an increase in overall survival time to a median 27.2 months, with a range from 11.5 months to 72.4 months (more than six years, for a disease that rarely sees more than a one-year survival time).” 
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           Throughout his studies, Dr. Souweidane and his team have examined hundreds of pediatric brain tumor samples and found that, in most cases, tumors had a high expression of the B7-H3 protein compared to healthy samples. This discovery was significant enough to determine B7-H3 as a target for anti-cancer drugs for the tumors studied. And to this day, Dr. Souweidane remains committed to improving the outcomes for children with DIPG cancer. 
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           Further research also shows several therapeutic avenues for DIPG that provide hope, including targeted therapies, epigenetic therapy, and immunotherapy. Additionally, “since the development of targeted therapies for DIPG, approximately 
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           250 clinical trials have been initiated
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            against biological pathways in the disease.” Yet, one of the main challenges researchers need to overcome is the effective delivery of treatment across the blood-brain barrier. 
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           Promising New Research and Clinical Trials Using Chimeric Antigen Receptor (CAR) T-Cell Therapy to Treat DIPG Cancer
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           For two decades, the DIPG community has had another unwavering ally in finding a cure for this deadly pediatric brain tumor. Dr. Michelle Monje, MD, Ph.D., is a neuroscientist and neuro-oncologist, professor of neurology and neurological sciences at Stanford University and a Howard Hughes Medical Institute Investigator. A 
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           recent article for Stanford Magazine
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            chronicles Dr. Monje’s journey, with one of her first major glioma breakthroughs identifying the “role of neurodevelopmental biology in pediatric brain cancer” and the critical importance that the brain’s micro-environment plays in the proliferation of a brain tumor.
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           Over the years, Dr. Monje has made many other groundbreaking discoveries about how DIPG functions. For example, oligodendrocyte precursor cells (OPCs). which go on to create myelin (the sheath around nerves) through oligodendrocytes, increase at the peak of “the myelination wave that happens at the location (ventral pons) and age range (6 to 8 years) in which DIPG tend to show up.” This finding meant that “dysfunctional OPCs were the genesis of DIPG.” 
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           In a 2019 paper for Nature, titled 
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           Electrical and Synaptic Integration of Glioma Into Neural Circuits
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           , Dr. Monje and her colleagues published perhaps one of the biggest discoveries about DIPG cancer — a “synaptic and electrical integration into neural circuits promotes glioma progression.” This discovery meant that scientists identified the highly complex ways that a glioma takes advantage of the brain’s environment to grow. 
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           And, throughout her years of research, Dr. Monje has discovered the growth factor neuroligin-3 and GD-2, a sugar molecule found on the surface of a DIPG tumor — it’s also an almost exact target for CAR T-cell therapy to treat DIPG cancer. 
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            In collaboration with Dr. Crystal Mackall, MD, Ernest and Amelia Gallo Family Professor of Pediatrics and Internal Medicine at Stanford University, Dr. Monje provided insights into using the GD-2 target to treat DIPG, to Dr. Mackall, who was using CAR-T cells to target GD-2 in neuroblastoma. 
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           This collaboration has led to new and promising results through several clinical trials, using rounds of CAR-T cells delivered intravenously and intracerebroventricularly (via lumbar puncture to the cerebral spinal fluid). Not only are the results dramatic in animal models — reducing tumors to almost nothing, but human patients are also seeing a dramatic reduction in the size of DIPG tumors and improvement in symptoms. 
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           And recently, 
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           further clinical trials of the GD-2 CAR-T cells
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            for the treatment of DIPG and diffuse midline glioma (DMG) continued to show favorable results as reported by Dr. Monje’s colleague Dr. Robbie Majzner, MD, Assistant Professor of Pediatrics in the Division of Hematology and Oncology at Stanford University at the 2022 American Association for Cancer Research Annual Meeting. Now, the goal is to continue research to find the right dosage, deliverability, and timing to win the battle against DIPG cancer. 
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           Solving Kids’ Cancer’s Role in DIPG Awareness &amp;amp; Research 
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           Brain cancer is the leading cause of cancer death among pediatric patients. Despite significant improvements in outcomes for some 
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           rare pediatric cancers
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           , when current treatments such as chemotherapy, surgery, or radiation fail, there is still an unacceptably low chance of survival for some brain cancers. This is mainly due to pediatric brain tumors being more aggressive and research and funding being insufficient. 
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            At Solving Kids’ Cancer, we prioritize and fund innovative preclinical research and early phase clinical trials with a strong rationale for potential benefit to children with poor prognosis cancers — like diffuse intrinsic pontine glioma. 
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            Over the past decade, we have funded three DIPG cancer-specific clinical trials and eight additional trials that included the study of DIPG and other types of pediatric brain tumors. 
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           But our work doesn’t stop there. With a focus on innovative treatments, such as immunotherapy, and global collaboration with cutting-edge research scientists and medical doctors, Solving Kids’ Cancer has funded work in more than 110 cancer centers across 15 countries. We are dedicated to pushing the limits of innovation and believe it is possible to find a cure for rare pediatric brain tumors like DIPG. 
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           Help increase DIPG awareness this May — Brain Tumor Awareness Month — by helping fund the development of new, more effective treatment options for children facing the most challenging and deadly pediatric brain tumors. 
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           Your gift to Solving Kids’ Cancer
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            will provide patients with brain tumors and their families with the hope of discovering more successful treatment options — because Every Kid Deserves to Grow Up®. 
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            ﻿
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      <pubDate>Fri, 13 May 2022 09:18:39 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/advancing-dipg-cancer-research</guid>
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      <title>Fertility Issues for Childhood Cancer Survivors</title>
      <link>https://www.solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors</link>
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           When pediatric cancer patients are fighting for their lives, parents have to stay laser-focused on the here and now. As a result, there is often little room for thoughts about the late effects of cancer treatment on children— including fertility preservation for cancer patients. But according to Dr. Sogol Mostoufi-Moab, MD, MSCE, a dual-certified pediatric oncologist and endocrinologist at the Children’s Hospital of Philadelphia, “Nine out of ten children who successfully reach a cure from cancer will develop a chronic condition.” What’s more, endocrine disorders, which can cause infertility, have a 75% prevalence — making them the most common morbidity in childhood cancer survivors. 
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           Childhood cancer survivors can face challenges years after treatment is complete and full remission is achieved. In this article, we cover fertility issues resulting from common childhood cancer treatments, methods of fertility preservation, and how parents can support their child into adulthood with survivorship care plans. 
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           Common Childhood Cancer Treatments &amp;amp; How They Can Affect Fertility
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           There is no such thing as a one size fits all approach to treating childhood cancer. Based on the type of cancer, pediatric oncologists use standard protocols or recommend enrolling on a clinical trial testing a new protocol versus the current standard of care. According to the National Cancer Institute, some of the 
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           most common childhood cancer treatments
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            include: 
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           • Surgery: 
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           Unlike a biopsy, where a surgeon makes a minimally invasive incision to remove a piece of tissue for testing, surgery is used to remove a mass (tumor) from the body. Along with the mass, surgeons also remove some of the surrounding tissue (known as the margin) to ensure the surrounding tissue is also free of malignancy. 
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           • Adverse effects on fertility in both sexes: 
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           No adverse effects unless it involves the injury or removal of reproductive organs or secondary complications (results of a surgical procedure that may worsen over time). 
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           • Chemotherapy: 
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           Uses medications administered either intravenously or orally to kill cancer cells. Often, a patient undergoing chemotherapy will have a central venous line (CVL) that exits the chest, or a port, under the skin, where doctors can administer medication and draw blood. A CVL alleviates the need for a patient to undergo multiple needle sticks, and a port reduces the chance of infection in the line, since most regimens require months of treatment.
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           • Adverse effects on fertility in females: 
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           Chemotherapy can affect the viability of the ovaries as it’s considered a gonadotoxic treatment — especially when alkylating chemotherapy agents are used. However, prepubertal ovaries are typically more resistant to chemotherapy damage when compared to post-pubertal ovaries in female children. Sometimes the damage is only temporary, but sometimes treatment can cause permanent damage, affecting a female’s fertility. Some childhood cancer survivors may also experience premature menopause, but younger cancer patients are less likely to experience this as one of the late effects of chemotherapy. If they do, it’s typically many years after cancer treatment is complete, but before the age of 40 years. 
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           • Adverse effects on fertility in males:
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            Chemotherapy can affect the viability of sperm since it is gonadotoxic. Sometimes this is only temporary, but sometimes treatment can cause permanent damage, affecting a male’s fertility — especially after alkylating chemotherapy agents. Likewise, chemotherapy can inhibit the ability of a male to get and keep an erection. However, most childhood cancer survivors do not experience permanent effects on sexual performance. 
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           • Radiation therapy: 
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           Uses beams of radiation to kill cancer cells. Depending on the type of cancer a patient has, an oncologist may recommend a course of treatment consisting of chemotherapy in conjunction with radiation therapy. 
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           • Adverse effects on fertility in females: 
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           Radiation is gonadotoxic and can affect the ovaries’ viability, especially when a patient receives concentrated radiation to the lower abdominal and pelvic area. Radiation can destroy or damage some or all of a childhood cancer survivor’s eggs, potentially leading to infertility in the future. Females may also experience premature menopause as one of the late effects of radiation. If they do, it’s typically many years after cancer treatment is complete, but before the age of 40 years. 
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           Additionally, cranial radiation can affect the hypothalamic-pituitary-ovarian axis, affecting the body’s ability to produce the hormones necessary for ovulation.
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           • Adverse effects on fertility in males: 
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           Radiation can affect the viability of sperm, especially when a patient receives concentrated radiation to the lower abdominal and pelvic area as it’s considered a gonadotoxic treatment. Sometimes this is only temporary, but sometimes treatment can cause permanent damage, affecting a childhood cancer survivor’s fertility. Fertility issues are commonly seen in patients who receive low-dose radiation; however, prepubescent males tend to see less damage to their sperm cells. 
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            Additionally, cranial radiation can affect the hypothalamic-pituitary axis, affecting the body’s ability to produce the hormones necessary for producing sperm. The younger the child, the more radiosensitive their hypothalamic-pituitary axis. 
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           • Immunotherapy: 
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           Stimulates the body’s immune system to kill cancer cells. Like chemotherapy, immunotherapy can be administered intravenously or orally. Some 
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           immunotherapy treatments
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            may require an extended hospital stay. 
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           • Adverse effects on fertility in both sexes: 
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            Currently, there is little longitudinal data that demonstrates how immunotherapy affects, if at all, a childhood cancer survivor’s fertility. If your child is undergoing immunotherapy, it’s important to speak with their oncologist about your concerns regarding fertility preservation for cancer patients. 
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           • Allogeneic or autologous transplant: 
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           Uses peripheral blood CD34+ cells collected by apheresis from a matched donor (allogeneic) or self (autologous). After myeloablative conditioning with chemotherapy, the cells are given by IV infusion, similar to a blood transfusion, to regenerate a healthy immune system. Allogeneic or autologous transplants occur after a patient has already had chemotherapy to reduce the burden of cancer to a minimum, and conditioning regimens can involve very high doses of chemotherapy.
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           • Adverse effects on fertility in females: 
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           Since allogeneic or autologous transplant patients typically undergo multiple rounds of chemo and, in some cases, radiation before transplant, many females do experience permanent infertility due to damaged ovaries. This is especially true for childhood cancer survivors who received total body irradiation.
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           • Adverse effects on fertility in males:
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            Males who receive allogeneic or autologous transplant have already undergone multiple rounds of chemotherapy and, in some cases, radiation, which can result in permanent infertility. This is especially true for those who received total body irradiation.
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           Methods of Fertility Preservation for Cancer Patients
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           Considering a child’s future fertility can feel like a huge responsibility for parents — especially amid aggressive cancer treatment. However, even if parents don’t know if their child will want children of their own in the future, parents should know they have options to explore to preserve their child’s fertility. 
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           Furthermore, the American Society of Clinical Oncology recommends that oncologists should “be prepared to discuss possible fertility preservation options or refer appropriate and interested patients to reproductive specialists.” Here are some standard methods for fertility preservation for cancer patients and their risks per Dr. Lisa Dillar, MD, Vice-Chair, Department of Pediatric Oncology at Boston Children’s Hospital/Dana-Farber Cancer Institute: 
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           Female cancer patients
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           • Oocyte cryopreservation: 
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           The removal and freezing of an egg from the ovary. A female must be pubescent or have already undergone puberty for this procedure. Females also have to undergo fertility treatments in preparation for egg retrieval. 
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           • Embryo cryopreservation:
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            The removal and fertilization of an egg from the ovary. A female must be pubescent or have already undergone puberty for this procedure and undergo fertility treatments for egg retrieval. The egg is fertilized through in-vitro fertilization, resulting in an embryo that is then frozen and can be transferred to a childhood cancer survivor’s uterus or carried by a surrogate later. 
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           • Ovarian tissue cryopreservation: 
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           The removal of the ovarian cortex, where the ovarian follicles exist and typically release eggs during a female’s ovulation. The tissue is frozen and stored and can be re-implanted later. 
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-8-768x576.png" alt="A female doctor is showing a model of the female reproductive system to a patient."/&gt;&#xD;
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           Risks of fertility preservation for female cancer patients: 
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              • A delayed start to cancer treatment 
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              • Procedural risks
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              • The social-emotional toll of egg retrieval 
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              • Reintroducing neoplasia (malignant cells) 
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              • Removal of an ovarian cortex that could later play a role in a female’s fertility
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              • Unknown pregnancy success and outcomes
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           Male cancer patients
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           • Sperm cryopreservation: 
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           The production of and freezing of sperm. A male must be post-pubertal for this method. 
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           • Testicular sperm extraction: 
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           The retrieval of sperm through various methods such as a small incision, aspiration, or biopsy of the testicles. This procedure is typically performed when a post-pubertal male cannot produce a semen sample. 
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           • Testicular tissue cryopreservation:
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            In prepubescent males, this is the removal of testicular tissue and the cells that create sperm (spermatogonia), while pubescent and post-pubescent males will have testicular tissue, spermatogonia and sperm removed and frozen. This treatment is still developing, and there are no known cases of childhood cancer survivors who regained fertility or where pregnancy has been achieved. 
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           Risks of fertility preservation for male cancer patients: 
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              • A delayed start to cancer treatment
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              • Procedural risks
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              • The social-emotional toll of procedures 
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              • Damage to the sperm cells
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              • Unknown pregnancy outcomes (fetal health) 
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            ﻿
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           How Parents Can Support Their Child Into Adulthood With a Survivorship Care Plan
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           Making decisions that can impact a child’s future fertility is not easy. Whether or not parents decide to pursue fertility preservation for their child, they should work with their child’s oncologists to compile information about their diagnosis, course of treatment, prognosis, and expected outcome. This information will be of critical importance should a child wish to learn more about their medical history and how it can impact their fertility as an adult. 
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           If complete remission is achieved, long-term follow-up care for pediatric cancer should be discussed. Parents may consider having their child see a primary care physician that specializes in working with childhood cancer survivors and has experience partnering with oncologists. When it’s developmentally appropriate, kids need to be educated on what they’re going through and what it can mean for their future. 
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           It’s also helpful to remember that families can be formed in many different ways, so if a childhood cancer survivor’s fertility is permanently impacted, it doesn’t mean they cannot pursue having a family one day if they wish.
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           Fertility is one critical piece of the overall care of pediatric cancer patients. When you 
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           give to Solving Kids’ Cancer
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            , you help advance finding, funding, and advocating for breakthrough treatment options to cure children with childhood cancers — because Every Kid Deserves to Grow Up®. 
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      <pubDate>Mon, 25 Apr 2022 09:23:21 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/fertility-issues-for-childhood-cancer-survivors</guid>
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      <title>CME Sessions Can Also Benefit Parents</title>
      <link>https://www.solvingkidscancer.org/blog/cme-sessions-can-also-benefit-parents</link>
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           CME (Continuing Medical Education) sessions or activities serve to maintain, develop, or increase the knowledge, skills, and professional performance and relationships that a physician uses to provide services for patients, the public, or the profession.
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           SKC occasionally participates in sponsored CME sessions for researchers and healthcare professionals. The following sessions may be of interest to parents.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-5-768x512.png" alt="A nurse is working on a machine in a laboratory."/&gt;&#xD;
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           Treatment Options
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           Dr. Navin Pinto from Seattle presents on navigating treatment decisions for neuroblastoma. 
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           “Navigating Treatment Options at Different Timepoints of Care in Relapsed/Refractory High-Risk Neuroblastoma (NB)”
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    &lt;span&gt;&#xD;
      
            is a session exploring how biological factors, age, and stage of tumor determine treatment, and discusses how anti-GD2 antibodies significantly improved survival. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.cancercoachlive.com/app/signup/partnerregistration?_loc=/app/directToPresentation/091721_PAT_CAN_pediatricNeuroblastoma_CH1&amp;amp;_dg=MD&amp;amp;_em=CH1@SKC.com&amp;amp;_fn=Demo&amp;amp;_ln=Demo&amp;amp;_ref=SKCOD" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Watch
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            on demand. 
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           Finding Support
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Jennifer Saggio, neuroblastoma NP from CHOP discusses treatment decisions for neuroblastoma. 
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    &lt;strong&gt;&#xD;
      
           “Finding Support and Building Your Community”
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
             is a session to help with identifying resources for parents of children with neuroblastoma, with information on how shared decision-making is important for parents and the medical team. 
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      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.cancercoachlive.com/app/signup/partnerregistration?_loc=/app/directToPresentation/091721_PAT_CAN_pediatricNeuroblastoma_CH3&amp;amp;_dg=MD&amp;amp;_em=CH3@SKC.com&amp;amp;_fn=Demo&amp;amp;_ln=Demo&amp;amp;_ref=SKCOD" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Watch
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            on demand. 
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/PE_parents-and-providers-768x512.jpg" alt="A man and a woman are sitting at a table talking to a doctor."/&gt;&#xD;
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      <pubDate>Wed, 20 Apr 2022 16:36:09 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/cme-sessions-can-also-benefit-parents</guid>
      <g-custom:tags type="string" />
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    <item>
      <title>Orphan Drugs &amp; Their Impact on Rare Childhood Cancers</title>
      <link>https://www.solvingkidscancer.org/blog/orphan-drugs</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Having a child with rare cancer that has no established treatment protocol can leave you feeling like you have nowhere to turn. But as science continues to progress, new and innovative cancer treatments are becoming more available. These treatments are called orphan drugs, and in this article, we explain what they are, how the US Food and Drug Administration (FDA) makes them available to the public, insurance questions, and more.
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           What Are Orphan Drugs?
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           According to the National Cancer Institute, orphan drugs are medications or treatments used to “treat, prevent, or diagnose an orphan disease” — a disease the FDA says affects “less than 200,000 people in the United States.” Each type of childhood cancer is rare, with about 15,000 children diagnosed annually in the United States in individuals younger than 20 years old.
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           What Are Ultra-Orphan Drugs?
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           Ultra-orphan drugs treat the rarest diseases in the world, which often impact less than 1 in 50,000 people globally and are typically the most serious, potentially debilitating, and fatal.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Untitled-design-2-768x593.png" alt="A person wearing purple gloves is putting pills in a petri dish."/&gt;&#xD;
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           The Orphan Drug Act of 1983
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           Developing medications and treatments for rare diseases is not lucrative for pharmaceutical companies. The cost of research, development and approval for drugs to treat rare diseases can be astronomical. That’s why, for many years, there were very few advancements in the realm of pharmaceutical treatment for rare diseases. 
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           However, in 1983, the U.S. Congress passed the Orphan Drug Act, a law that incentivizes the pharmaceutical industry to research and develop more treatments for rare diseases. Since the law’s passing, the FDA has approved hundreds of orphan drugs and granted thousands of FDA breakthrough drug designations — providing more novel treatments for diseases like 
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    &lt;a href="https://solvingkidscancer.org/role-impact/" target="_blank"&gt;&#xD;
      
           rare childhood cancers
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            and more hope for patients and their families.
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           4 Ways the FDA Makes Orphan Drugs Accessible to the Public
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           When it comes to potentially life-saving drugs, the FDA has 
          &#xD;
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    &lt;a href="https://www.fda.gov/patients/learn-about-drug-and-device-approvals/fast-track-breakthrough-therapy-accelerated-approval-priority-review#:~:text=The%20Food%20and%20Drug%20Administration,Accelerated%20Approval" target="_blank"&gt;&#xD;
      
           four ways to expedite their availability
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           , including: 
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           • Fast Track:
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            A process to create and get drugs to patients faster. Treatments must fill an unmet medical need, such as being the first of its kind to treat a disease or provide a superior outcome or fewer side effects, for example. Pharmaceutical companies that develop fast-tracked drugs may also receive an expedited FDA review process to gain approval. 
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Breakthrough Therapy: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           A process to create and get drugs to patients faster 
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    &lt;strong&gt;&#xD;
      
               
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           when the drug shows a superior outcome over existing treatment. Pharmaceutical companies who develop breakthrough therapies receive the
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           same FDA benefits as fast-tracked drugs, plus additional guidance.
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           • Accelerated Approval:
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            A process to create and get drugs to patients faster when a drug is believed to forecast a clinical benefit. Researchers can demonstrate benefits through various mediums such as lab results and diagnostic imaging. Accelerated approval with the FDA is based on evidence that a patient’s outcome may improve. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           • Priority Review: 
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    &lt;/strong&gt;&#xD;
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           A process to create and get drugs to patients faster via an expedited and dedicated reviewal process (typically within six months). For a priority review, the drug must prove a significant improvement in patient outcomes based on various evidence points.
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  &lt;h2&gt;&#xD;
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           How to Access Orphan Drugs
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           Parents should speak to their child’s medical oncologist for more information and recommendations on the best course of treatment. Typically, an oncologist will prescribe and submit the request for treatment to insurance companies on the patient’s behalf. 
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           Tip: 
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           Try researching highly specialized healthcare institutions (tertiary or quaternary care institutions), as they tend to be on the cutting edge for treating rare diseases and running 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/role-impact/our-projects/projects-all/" target="_blank"&gt;&#xD;
      
           pediatric clinical trials
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           . 
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  &lt;/p&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           For more information on currently available orphan drugs, the Genetic and Rare Diseases Information Center (GARD) provides a 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://rarediseases.info.nih.gov/diseases/fda-orphan-drugs/A" target="_blank"&gt;&#xD;
      
           list of FDA orphan drugs
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            that can be sorted by rare disease names.
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  &lt;/p&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           Does Insurance Cover Orphan Drugs?
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           Unfortunately, for various reasons, these types of drugs remain significantly more expensive than everyday pharmaceutical drugs and treatment. Per the American Journal of Managed Care, “Health plans restrict access to orphan drugs approximately one-third of the time, and restrictions vary considerably across plans,” with insurance companies generally restricting the most expensive orphan drugs. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But all is not lost. That means two-thirds of the time, orphan drugs are approved by insurance companies. And it can also be well worth it to reach out directly to pharmaceutical companies to see if they are willing to subsidize or waive the cost of treatment.
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  &lt;/p&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           The Impact of Orphan Drugs on Rare Childhood Cancers
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Orphan and ultra-orphan drugs provide hope and a fighting chance for children battling rare childhood cancers — children who have dreams and aspirations — just like any other child. In addition, novel medications and treatments can, in some cases, improve a cancer patient’s outcome and quality of life. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           But there is so much more to be done. Funding effective treatments and breakthroughs for childhood cancer has never been more urgent. That’s why nonprofit and medical organizations, researchers, and medical oncologists continue to advocate for research into childhood cancers with low survival rates. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we help accelerate new, next-generation treatments, including immunotherapy, cancer vaccines, and new drug combinations by carefully applying an understanding of the entire childhood cancer research landscape to invest in the most promising, innovative projects…. and clinical trials. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When you 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_orphan_drugs_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_orphan_drugs_1&amp;amp;utm_medium=blog&amp;amp;utm_content=orphan_drugs_cta_1" target="_blank"&gt;&#xD;
      
           give to Solving Kids’ Cancer
          &#xD;
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    &lt;span&gt;&#xD;
      
           , you help positively impact the lives of children living with rare cancers today and in the future by making better treatment options possible — because Every Kid Deserves To Grow Up®.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_orphan_drugs_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_orphan_drugs_2&amp;amp;utm_medium=blog&amp;amp;utm_content=orphan_drugs_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/BUTTON-1-768x192.png" alt="A pink button that says `` fund a new treatment today ''."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Mon, 11 Apr 2022 09:37:15 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/orphan-drugs</guid>
      <g-custom:tags type="string" />
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      <title>Clinical Trials: What to Expect and How to Advocate for Your Child</title>
      <link>https://www.solvingkidscancer.org/blog/clinical-trials-what-to-expect-and-how-to-advocate-for-your-child</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Clinical trials are a vital part of scientific research. When a researcher is developing a new therapy or treatment, clinical trials are how they make sure it’s safe and effective before it can become widely available. Oftentimes, a clinical trial is used to learn if a new treatment has less harmful side effects than the standard treatment options.
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      &lt;span&gt;&#xD;
        
            ﻿
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  &lt;p&gt;&#xD;
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           But for a child diagnosed with a rare type of pediatric cancer, clinical trials are about much more than moving science forward — they provide families with hope.
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           How does a pediatric clinical trial work?
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           Until the early 1960s, children and their healthcare providers had to rely only on treatments and therapies that were tested and proved effective in adults. However, because children’s bodies and brains are not yet fully developed, the clinical trials often caused harmful side effects that resulted in even more health issues.
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           Today, pediatric clinical trials are necessary to create evidence-based treatment protocols that are safe and effective for children. These trials are open to adolescent participation, provided the consent of a legal parent or guardian. 
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/photo-768x512.png" alt="A doctor is holding the hand of a little girl in a hospital."/&gt;&#xD;
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           Pediatric clinical trials follow a similar process to adult clinical trials, including:
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              1. Developing research questions
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              2. Securing funding
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              3. Developing a formal protocol or study plan
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              4. Gaining approval from an Institutional Review Board
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              5. Enrolling participants
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              6. Performing the study
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              7. Collecting the data
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              8. Analyzing the results
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              9. Publishing the research findings in peer-reviewed journals
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           What are the phases of clinical trials?
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  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/#about_trials" target="_blank"&gt;&#xD;
      
           Clinical Trials advance through four phases
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    &lt;span&gt;&#xD;
      
            to test a treatment, find the appropriate dosage and look for side effects. If, after the first three phases, researchers find a drug to be safe and effective, the United States Food and Drug Administration (FDA) approves it for clinical use and continues to monitor its effects.
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
              • Phase 1 — Is the treatment safe?
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              • Phase 2 — Does the treatment work?
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              • Phase 3 — Is it better than current standard treatment?
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              • Phase 4 — What can we still learn?
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  &lt;p&gt;&#xD;
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How to enroll in a clinical trial
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           A critical first step in enrolling in a clinical trial is finding the right fit for your child and your family. Clinical trials can offer options to children whose illness is not responding to treatment, but it is important to weigh the potential benefits against the risks when considering enrolling your child in a trial. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/#how_to_enroll" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/BUTTON-768x192.png" alt="A pink button that says `` find a clinical trial for your child ''"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Some possible risks of being in a clinical trial can include:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
              • The new treatment may not work for your child, even if it helps others.
           &#xD;
      &lt;br/&gt;&#xD;
      
              • The new treatment may have unknown side effects or side effects that may be worse than those from standard treatment. 
           &#xD;
      &lt;br/&gt;&#xD;
      
              • Insurers may not cover all costs of the clinical trial. Be sure to speak with your insurance provider before you decide to enroll your child. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Additionally, consider how long the trial will run and whether you might have any out-of-pocket expenses, like flights and hotel stays if you’re traveling out of the state or country.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           You’ll need to know key information about your child’s medical history to find a suitable clinical trial, including your child’s diagnosis details, age, cancer type, all treatment and dates received, copies of scans and results, as well as current health and disease status. Talk with your doctor and healthcare team to help you with this step, and make sure that your pediatric oncologist is part of the conversation. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           After having these critical conversations, and once you’ve identified a specific clinical trial to consider, contact the Principal Investigator (PI) of the trial that you are interested in for next steps and further enrollment details.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How to Be the Best Patient Advocate for Your Child
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/s2-768x524.jpeg" alt="A doctor is listening to a boy and a girl with a stethoscope."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Being a patient advocate can be an overwhelming role, but as parents, you know your child better than anyone else. Navigating a clinical trial can be daunting, so start with these four tips:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           &amp;gt;&amp;gt; Ask questions
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every question is a valid question when your child is enrolled in a pediatric cancer clinical trial. Don’t be afraid to ask questions or bring up any issues concerning the trial at any time. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           &amp;gt;&amp;gt; Keep your own records
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Have a pen and paper handy at all times. Your child’s treatment may include visits to different hospitals and with different doctors. It’s important to keep your own records and to become an expert in your child’s treatment plan. You never know when new information may emerge and it’s important to ensure continuity of care for your child. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           &amp;gt;&amp;gt; Connect with others
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Ultimately, the decision to participate in clinical research is one that only you can make for your child. But if you’re having trouble weighing the pros and cons, try discussing it with other members of the pediatric cancer community and other parents who’ve been in this situation.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           &amp;gt;&amp;gt; Listen to your gut
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           If you’re not satisfied with the information given to you or the trajectory of the clinical trial, you can take your child out of a trial at any time. Remember — you know your child best.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we believe that funding just one clinical trial can save lives. Far too often, children face a dismal prognosis and urgently need better options. Together, we can 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_clinical_trials_what_to_expect_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_clinical_trials_what_to_expect_1&amp;amp;utm_medium=blog&amp;amp;utm_content=clinical_trials_cta_1" target="_blank"&gt;&#xD;
      
           continue to fund
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            breakthrough treatment options and save lives. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_clinical_trials_what_to_expect_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_clinical_trials_what_to_expect_2&amp;amp;utm_medium=blog&amp;amp;utm_content=clinical_trials_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/GIVE-768x81.png" alt="A pink circle with the words `` give today '' written on it."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           References:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
        
            https://solvingkidscancer.org/understanding-clinical-trials/
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;a href="https://solvingkidscancer.org/parent-advocacy-resources/" target="_blank"&gt;&#xD;
        
            https://solvingkidscancer.org/parent-advocacy-resources/
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
             
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;a href="https://www.clinicaltrials.gov/" target="_blank"&gt;&#xD;
        
            https://www.clinicaltrials.gov/
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
             
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;a href="https://www.fda.gov/consumers/consumer-updates/would-your-child-benefit-clinical-trial" target="_blank"&gt;&#xD;
        
            https://www.fda.gov/consumers/consumer-updates/would-your-child-benefit-clinical-trial
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
             
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;a href="https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/who-does-clinical-trials.html" target="_blank"&gt;&#xD;
        
            https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/who-does-clinical-trials.html
           &#xD;
      &lt;/a&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Thu, 07 Apr 2022 09:41:41 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/clinical-trials-what-to-expect-and-how-to-advocate-for-your-child</guid>
      <g-custom:tags type="string" />
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    </item>
    <item>
      <title>This Week in Pediatric Oncology (TWiPO): A Podcast Dedicated to Sharing Ideas &amp; Working Together for Cures</title>
      <link>https://www.solvingkidscancer.org/blog/check-out-this-week-in-pediatric-oncology-twipo-a-podcast-dedicated-to-sharing-ideas-working-together-for-cures</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-768x768.png" alt="This week in pediatric oncology with dr. timothy cripe and dr. brenda weigel from the university of minnesota"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Childhood cancer is a complicated disease. Whether you’re a clinician, researcher yourself or caring for a child with cancer, we want to give you the tools to deepen your understanding. For more than a decade, Solving Kids’ Cancer has earned a seat at the table among some of the most inspiring researchers and like-minded organizations that are making a significant impact on the pediatric cancer research landscape.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This Week in Pediatric Oncology (TWIPO) podcast
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      
            helps you tap into the knowledge of those leading pediatric cancer experts. Produced by Solving Kids’ Cancer, TWIPO explores hot topics and exciting advances in childhood cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           TWIPO is a free podcast hosted by Dr. Timothy Cripe from Nationwide Children’s Hospital and Dr. Brenda Weigel from University of Minnesota’s Cancer Center and the Department of Pediatrics. Podcast episodes average around 35 minutes each and include topics such as new scientific breakthroughs from clinical trials, interviews with top pediatric cancer experts, and firsthand accounts from families battling cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           With the 100th episode planned for June, this series has already seen more than 70,000 downloads from all over the world including as far away as Egypt, New Zealand, Taiwan and South Africa.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/podcast/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Click here
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to see the full episode list.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Subscribe to TWIPO wherever you stream your podcasts.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Help Solve Kids’ Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer is dedicated to providing support and resources for breakthrough treatment options to cure children with the most fatal childhood cancers.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_check_out_twipo&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_check_out_twipo&amp;amp;utm_medium=blog&amp;amp;utm_content=twipo_overview" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate.png" alt="A pink donate button on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-768x768.png" length="257964" type="image/png" />
      <pubDate>Fri, 25 Mar 2022 13:07:53 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/check-out-this-week-in-pediatric-oncology-twipo-a-podcast-dedicated-to-sharing-ideas-working-together-for-cures</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-768x768.png">
        <media:description>thumbnail</media:description>
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    <item>
      <title>What Is Hope In Light of a Terminal Diagnosis?</title>
      <link>https://www.solvingkidscancer.org/blog/what-is-hope-in-light-of-a-terminal-diagnosis</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Lara Cady Weberling is a writer, childhood cancer advocate, and a member of the New Approaches to Neuroblastoma Therapy (NANT) consortium parent advisory panel. At a recent international parent symposium, she expressed the role hope played for her family during her son’s fight against 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and what it means to her today.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Our son, Hans, fought neuroblastoma for six years – from the time he was 3 in the fall of 2006 to when he ultimately succumbed to his disease in 2012 at the age of 9. Since that time I’ve thought a lot about hope and the role it plays in fighting rare childhood cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           After Hans was diagnosed, he went through the standard treatment protocol and achieved the status of “NED” – no evidence of disease. In the spring of 2008, we were just beginning to try out the idea of easing into a more normal lifestyle when we noticed that Hans wasn’t quite using his right arm correctly – he would use both hands to take a sip of his drink and he would pull at the cuff of his right sleeve to move his arm around. In a desperate ER visit over one weekend, an X-ray confirmed probable recurrence of his stage four MYCN-amplified neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           We went home to schedule a follow-up visit with our oncologist, and as I waited for our car in the valet line outside of the hospital, I looked at my little 4-year-old sitting in his umbrella stroller and tried to explain to him that his “boo-boo,” as we referred to his tumor at the time, was trying to come back.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-1.jpeg" alt="A woman in a pink shirt is holding a little boy in a blue shirt"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           And he looked up at me with his big, sea-green eyes, and with pure faith and complete confidence, Hans said, “Well, my doctors will just have to get it out of there.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           From that moment on, Hans’s spirit-led our fight against relapse. At the time we, his parents, knew the odds weren’t good, but we also knew that they were doing research every day all over the country and around the world, so we focused on those facts – that the numbers were changing. And with hope and faith and science and these amazingly smart researchers that network across the globe, we proceeded.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hans went through a lot in his treatment for relapsed neuroblastoma. Chemotherapy, radiation, MIBG therapy, more chemo and radiation, immunotherapy, and on and on and on. Each new treatment was preceded by a failure of the previous attempt and a new progression of disease. And each time our Hans got back in the ring like a tiny gladiator. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When your child first relapses you don’t know what the treatment is going to look like. No one would ever sit down and write up Hans’s treatment path the way it turned out. It was reactive, intuitive, and responsive to two moving targets – the ever-changing tumor and, thankfully, the ever-advancing research. It was really hard and so scary. There was no road map, no finish line. There was just our little child, a good team, and hope.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every parent in this situation shares the hope that our child will make it through, that our family will remain whole, but what hope looks like and feels like to each of us is different. Yet I think once we really examine it we’ll find this ever-present thread: Hope is a constant companion in all human trials. And as far as being human goes, stage four high-risk multi-relapse neuroblastoma is certainly a formidable trial. Yet hope is always there.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sometimes it would come as a feeling or an image. I had an image of Hans as a grown young man jumping up to catch a football at the park with his friends. That image would occur to me over and over, the simple image of Hans having a life on the other side of treatment, and I found it was mutually exclusive to my terrors and fears.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           I always said our treatment was our life raft – we clung to our treatment plan and hope kept it afloat. In another image I’d have, Hans and I were hanging on to that life raft – it was really more like a flimsy little kickboard – and we were on this fast-moving, challenging river with rapids. It was exhausting, but just ahead was a lagoon, a still blue pool, and we just had to make it over there. I think all parents of children with cancer have these images or visual mantras that come to us and bring us peace and calm in our storm and remind us of what is possible – of what we’re fighting for.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hope can also be brought to us through others. Sometimes it might come on a silver platter, like a free flight across the country for a promising new treatment. Other times it gets dropped off on the front porch – teddy bears, coloring books, Legos and Transformers, dinner kits all lovingly packaged up for our family of four.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           I think a lot about the ways our friends, family, healthcare providers, and even strangers showed up and how their large and small gestures brought us hope. We couldn’t have done this journey without it.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Now, for our family, hope looks different. We aren’t fighting anymore, and we have many of the normal hopes of any family, for joy and purpose and prosperity. We also find hope through the activities that we do to honor Hans and all the kids fighting this disease, and how we contribute to this community through our advocacy, our fundraising, and our research panel reviews that we engage in. We hope for a world where every child thrives, and I know things are changing every day with neuroblastoma and all childhood cancers, and I just know one day they’re going to figure it out. That’s the hope I hold on to.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           And for me now, there’s a feeling I can tap into – a feeling in my body and my mind that brings me right back into that loving space with Hans. When I’m really quiet and still, often just before I fall asleep, I tap into that sense of love and peace and connection in my body and in my mind and I feel the same sensation and emotion I felt when he was right there loving me. I like to exist in that space for a little while every day. That’s part of what my hope feels like now.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           At Solving Kids’ Cancer, we’re committed to funding research to find cures for the deadliest childhood cancers. This holiday season, give the gift of hope to families who need it most. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_hope_in_light_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_hope_in_light_1&amp;amp;utm_medium=blog&amp;amp;utm_content=what_is_hope_in_light_terminal_diagnosis_cta_1" target="_blank"&gt;&#xD;
      
           Donate now
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    &lt;span&gt;&#xD;
      
            and your donation will be matched by a generous donor, up to $25,000.
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    &lt;/span&gt;&#xD;
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&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_hope_in_light_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_hope_in_light_2&amp;amp;utm_medium=blog&amp;amp;utm_content=what_is_hope_in_light_terminal_diagnosis_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate.png" alt="A pink donate button on a white background."/&gt;&#xD;
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      <pubDate>Mon, 13 Dec 2021 09:47:11 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/what-is-hope-in-light-of-a-terminal-diagnosis</guid>
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      <title>What Being a Caregiver for a Kid with a Rare Childhood Cancer Looks Like</title>
      <link>https://www.solvingkidscancer.org/blog/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Lara Cady Weberling is a writer, childhood cancer advocate, and a member of the New Approaches to Neuroblastoma Therapy (NANT) consortium parent advisory panel. At a recent international parent symposium, she expressed the role hope played for her family during her son’s fight against 
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    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           neuroblastoma
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           , and what it means to her today.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/ty-and-mommy-640x427-3.jpg" alt="A woman is holding a child in her arms and pointing at him."/&gt;&#xD;
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           It’s hard to imagine what it’s like to be a caregiver for a kid with a rare childhood cancer unless you’ve actually been one. Cindy Campbell, mom of three boys, didn’t know anything about the role until she suddenly had to take it on when her oldest son, Ty, was diagnosed with 
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           ATRT
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           , a 
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    &lt;a href="https://solvingkidscancer.org/blog/rare-brain-tumors-in-kids/" target="_blank"&gt;&#xD;
      
           rare brain tumor
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           , in 2010. She explains how it changed everything for her from day one — and how, nine years after Ty’s death, she’s never been the same. 
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           It changes your life
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           No parent is ever prepared to hear the words, “Your child has cancer,” and from that moment on, their lives are changed forever. Many children with cancer need round-the-clock care, so one parent will often have to stay home to take care of their child, accompany them to doctor visits and hospital stays, and manage reports coming from the doctor. In Cindy’s case, she left her full-time job in corporate marketing to become a full-time caregiver for her son. “It became an immediate life change in every way,” she says of her son’s diagnosis. 
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           It’s a lot of pressure
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            ﻿
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           There’s no guidebook for how to care for a child with cancer. When parents are forced into the role of caregiver, they’re also forced to become experts in their child’s disease — its signs and symptoms, its treatment and side effects, and knowing when to call the doctor with a question or when to rush your child to the emergency room.
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           “When you’re blindsided with a diagnosis, so many things happen — like crossed eyes, trouble swallowing, disbalance — and you don’t know if it’s the medication or the brain tumor or if it’s an effect of the chemo, and it’s just so hard to know how to handle it,” Cindy said. As a caregiver, you have to decide if you should play it safe and go to the hospital, or take the wait-and-see approach to avoid unnecessary poking and prodding for something that might end up being nothing. The immense pressure to make the right decision — which often comes down to a guessing game — can be overwhelming, Cindy says.
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/at-the-beach-family-2.jpg" alt="A family is posing for a picture on the beach."/&gt;&#xD;
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           It feels isolating
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           Being a caregiver is never easy, and being a caregiver for a child with a rare cancer is one of the most difficult jobs there is, especially when you realize how few people really know what it’s like to be in your shoes. “I really felt alone,” Cindy says. “It’s hard when nobody really understands what you’re going through.”
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           It’s a constant balancing act
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            ﻿
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           Being a caregiver of a child with cancer is a 24/7 job — one that needs to be balanced with your existing responsibilities, like managing the household and tending to the needs of your partner and other children. Caregivers also need to balance their child’s emotional and psychological needs against their physical safety — should they keep them from school and activities to protect their weakened immune system, or should they let them go and risk them catching a virus that could land them in the ER? And somehow, caregivers have to find time to care for themselves and their own needs. “It’s a lot to juggle,” Cindy says.
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           It makes you find the strength you didn’t know you had
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           Caregivers of children with cancer experience the unimaginable. They have to witness their child endure pain and suffering — for days, weeks, or months on end — all while they’re powerless to help them. Yet somehow, they do find the strength to carry on. That strength can make them look superhuman to anyone else, but to people like Cindy, it’s just what they have to do. “People always say to me, ‘You’re so strong, you’re so inspiring,’ but I literally had no choice,” Cindy says. “I just did what I had to do like every amazing parent does when they’re faced with this.”
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    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we envision a reality where one day, the role of caregiver for a child with cancer won’t mean what it does today. In honor of National Family Caregivers Month, please 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_caregiver_rare_cancer_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_caregiver_rare_cancer_1&amp;amp;utm_medium=blog&amp;amp;utm_content=what_being_a_caregiver_looks_like_cta_1" target="_blank"&gt;&#xD;
      
           donate
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    &lt;span&gt;&#xD;
      
            and help us fund research to find cures for the deadliest childhood cancers.
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      &lt;span&gt;&#xD;
        
            ﻿
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_caregiver_rare_cancer_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_caregiver_rare_cancer_2&amp;amp;utm_medium=blog&amp;amp;utm_content=what_being_a_caregiver_looks_like_cta_1" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/button-768x256.png" alt="A purple button that says `` give today '' on a white background."/&gt;&#xD;
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&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/ty-and-mommy-640x427-3.jpg" length="36734" type="image/jpeg" />
      <pubDate>Mon, 15 Nov 2021 10:13:51 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/what-being-a-caregiver-for-a-kid-with-a-rare-childhood-cancer-looks-like</guid>
      <g-custom:tags type="string" />
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      <title>What to Expect from Neuroblastoma Global Parent Symposium 2021</title>
      <link>https://www.solvingkidscancer.org/blog/what-to-expect-from-neuroblastoma-global-parent-symposium-2021</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Symposium-Blog.png" alt="A banner for the neuroblastoma parent global symposium 2021"/&gt;&#xD;
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            Last year, over 700 parents, medical professionals, charity leaders, and industry representatives from 46 countries joined the first-ever
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    &lt;a href="/symposium"&gt;&#xD;
      
           Neuroblastoma Global Parent Symposium
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           , tuning in to hear the latest on neuroblastoma research, care, and survivorship from the world’s leading experts.
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            On
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           November 5 and 6
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           , the top neuroblastoma conference for parents will be back with more than 15 hours of live streaming content that you can access from anywhere. Here’s what you can look forward to at this year’s event:
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           Expanding your knowledge of neuroblastoma
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           Childhood cancer doesn’t come with a guidebook, and most parents don’t know much about it until their own child is diagnosed. Then, Google and obscure medical journals suddenly become their best friend, so they can become their child’s best advocate. In connecting parents with researchers and the work they’re doing, the Neuroblastoma Global Parent Symposium is designed to help parents deepen their understanding of this rare and aggressive form of childhood cancer — and that in turn helps them make more informed decisions about their child’s treatment and care, wherever they are in their child’s cancer journey.
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           Accessing the top experts in the field
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           Childhood cancer is a complicated disease, and when parents are faced with making important choices for their children, they’re often left with more questions than answers. The Neuroblastoma Global Parent Symposium presents parents with a unique opportunity to tap the knowledge of the leading authorities on neuroblastoma biology, research and clinical trials, late effects, and more. In addition to the informative presentations, attendees will get a chance to ask their own questions of the experts during live Q&amp;amp;A sessions.
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           Making lasting connections
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           When your child is diagnosed with cancer, the world can become a much lonelier place once you realize that most people can’t understand what you’re going through. The neuroblastoma conference provides parents with an opportunity to talk openly in private, topic-centered conversation rooms, helping them connect with others who are or have been in their shoes — the kind of connections that can last far beyond the weekend.
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      &lt;br/&gt;&#xD;
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    &lt;span&gt;&#xD;
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            This two-day, FREE event is open to families, neuroblastoma survivors, healthcare professionals, charitable organizations, and researchers — and we’d love to have you join us!
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    &lt;/span&gt;&#xD;
    &lt;a href="https://webapp.spotme.com/welcome/npgs" target="_blank"&gt;&#xD;
      
           Register now
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    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            and tune in at your convenience, plus gain access to presentation recordings that you can view and share anytime after the event is over on
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    &lt;/span&gt;&#xD;
    &lt;a href="https://www.youtube.com/channel/UCPf2wMnFK0YOZ2idAwqzWKA" target="_blank"&gt;&#xD;
      
           YouTube
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           .
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/unnamed-1.png" alt="A collage of four children , one of whom is wearing a graduation cap and gown."/&gt;&#xD;
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      <pubDate>Mon, 25 Oct 2021 15:04:11 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/what-to-expect-from-neuroblastoma-global-parent-symposium-2021</guid>
      <g-custom:tags type="string" />
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      <title>It’s Time to Lace Up For Kids!</title>
      <link>https://www.solvingkidscancer.org/blog/its-time-to-lace-up-for-kids</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/1.png" alt="A couple of people standing next to each other with the words lace up for kids above them"/&gt;&#xD;
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           September is Childhood Cancer Awareness Month.
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    &lt;span&gt;&#xD;
      
           It’s time to swap your white laces for some glittery gold shoelaces as you raise awareness and fundraise for childhood cancer research through
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    &lt;strong&gt;&#xD;
      
            
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;a href="https://indd.adobe.com/view/125f2b91-37da-4359-a2c1-0f37f4adc12a" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Solving Kids’ Cancer’s Lace Up For Kids program
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    &lt;strong&gt;&#xD;
      
           !
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           More than 82,000 pairs of gold shoelaces have found their way to all 50 U.S. states and around the world since Lace Up for Kids was launched in 2017! Through the power of social media, gold shoelaces landed in 20 countries including Australia, the Philippines, France, Canada, Austria, Senegal, Poland, and more.
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           Entire schools, notable influencers, sports leagues, and even pets have been spotted sporting their gold laces.
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           “Lace Up for Kids” became the celebrated theme of this little cat’s birthday party! 
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           Two moms from the greater Portland area of Oregon, Alicia Mattox and Tiffany Blok, wanted to show their support for kids and families affected by childhood cancer. They are Fit4Mom instructors who selected Lace Up For Kids to raise both awareness and critical funds for new research. 
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            ﻿
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           “One of our own Fit4Mom instructors recently had a nephew diagnosed with cancer, so we know that so many families are dealing with really difficult situations. We knew that September was Childhood Cancer Awareness Month and because of the pandemic, we were only holding virtual classes but really wanted to find something fun and engaging for our moms to rally around while doing something meaningful to give back. Lace Up for Kids was kind of a perfect fit. And the gold laces are such a great visual representation of your efforts to support the cause and to raise money for advances in research that lead to new treatments.”
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           -Tiffany Blok, Fit4Mom Instructor
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           How will you get involved in Lace Up for Kids? Here are some ideas!
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           • 
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           Register
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            as a team captain and ask for friends and family to join you!
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           • Swap your white laces for gold shoelaces, take pictures of notable places you travel in those gold laces, post to social media, and ask for friends and family to support childhood cancer research this September.
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           • Make it a team experience! Softball league? Basketball team? Football team? 
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           Order our gold laces in bulk
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            and get the whole team wearing gold laces, then ask spectators for donations for childhood cancer research.
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    &lt;a href="https://solvingkidscancer.rallybound.org/lace-up-for-kids-2021" target="_blank"&gt;&#xD;
      
           Sign up today
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            and make a 
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           GOLD
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            statement during Childhood Cancer Awareness Month. Every year, more than 400,000 children are diagnosed with cancer, and advances in care and treatment have not, in many cases, changed in decades. Let’s change the future for kids with cancer and their families.
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      <pubDate>Mon, 09 Aug 2021 13:08:15 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/its-time-to-lace-up-for-kids</guid>
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      <title>7 Ways to Help During Childhood Cancer Awareness Month</title>
      <link>https://www.solvingkidscancer.org/blog/7-ways-to-help-during-childhood-cancer-awareness-month</link>
      <description />
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           September is Childhood Cancer Awareness Month
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           , a time to shine a light on the thousands of families facing the unimaginable challenge of pediatric cancer. In the U.S., cancer is the leading cause of death by disease among children. About 1 in 285 children will face a cancer diagnosis before they turn 20.1 While advancements have been made, many families are still in desperate need of hope and support. 
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           But there is something we can all do.
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           Whether through donations, volunteering, or advocacy, each of us can make a difference by supporting research and spreading awareness to change the future for kids with cancer and their families. 
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           Here are seven ways you can help during 
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           Childhood Cancer Awareness Month
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           :
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            ﻿
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            1.
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            Donate
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            to Solving Kids’ Cancer
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           Your support can make a life-changing difference for children battling cancer. By making a donation to cancer research through Solving Kids’ Cancer, you’re helping to fund crucial research for better treatments. Despite advancements in some pediatric cancers, for others, the 
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           survival rate upon relapse remains tragically close to 0%
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           . Solving Kids’ Cancer is committed to finding new, effective therapies for these toughest cases. Your donation directly supports the development of life-saving treatments, giving every child the chance to grow up and live a full life.
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            2. Become a Volunteer
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           Volunteering during Pediatric Cancer Awareness Month is a powerful way to make a difference. Whether it’s visiting hospitals, offering transportation, or supporting families, your time can have a meaningful impact. Explore childhood cancer volunteer opportunities near you and be a part of this vital cause.
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            3. Spread the Word on Social Media
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           Raise awareness by sharing information about Childhood Cancer Awareness Month on your social media platforms. Use hashtags like 
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           #ChildhoodCancerAwarenessMonth
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            and 
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           #GoGold
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            to join the global conversation. You can also help by sharing Solving Kids’ Cancer’s 
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    &lt;a href="https://solvingkidscancer.org/the-latest/the-latest-all-2/" target="_blank"&gt;&#xD;
      
           stories of patients, survivors, and families
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           . These powerful stories highlight the resilience of children and the impact of the community’s support. The more people who know about pediatric cancer, the more support these children and their families can receive.
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           Arden’s Story
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           Arden was diagnosed with neuroblastoma at just 15 months old, facing a tough battle ahead. Thanks to the innovative treatments supported by Solving Kids’ Cancer, including access to critical clinical trials, Arden has reached No Evidence of Disease (NED).
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           [
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    &lt;a href="https://solvingkidscancer.rallybound.org/skcdonate/Donate" target="_blank"&gt;&#xD;
      
           DONATE NOW]
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            [
          &#xD;
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    &lt;a href="https://solvingkidscancer.org/blog/ardens-story-of-hope/" target="_blank"&gt;&#xD;
      
           READ MORE ABOUT ARDEN
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           ]
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           4. Participate in or Organize an Awareness Event
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           Attend or 
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           organize local events in your community
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            to raise awareness and funds for childhood cancer. Whether it’s a charity run, a gold-themed party, or a virtual awareness event, participating in these activities can make a significant impact. Events bring people together and amplify the message that every child deserves a future free from cancer.
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            5. Advocate for Childhood Cancer Research
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    &lt;a href="https://solvingkidscancer.org/role-impact/#research-advocacy" target="_blank"&gt;&#xD;
      
           Advocacy is a powerful way to drive progress
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           . Contact your local representatives and urge them to support policies and funding for pediatric cancer research. Join advocacy groups and participate in campaigns that push for more research funding and better treatments for children with cancer.
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            6. Support a Family Affected by Childhood Cancer
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           Supporting a family going through pediatric cancer
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            can make a world of difference. Offer your help by cooking meals, providing childcare, or simply being there to listen. Small acts of kindness can greatly ease the burden on families during such a challenging time.
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            7. Lace Up for Kids and Start a Fundraiser for Kids with Cancer
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           Childhood Cancer Awareness Month is symbolized by the color gold worldwide. As part of our annual Lace Up for Kids campaign, we’re giving out gold shoelaces for you to wear in honor of children fighting cancer. When you start your own fundraising page, we’ll send you a pair, and we’ll also send a free pair to every friend who donates to your childhood cancer fundraiser. 
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           You can make an even bigger impact by hosting events like walk-a-thons, bake sales, or virtual challenges. Share your journey on social media with the hashtag 
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           #LaceUpForKids
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            to inspire others to get involved. Every step you take and every dollar you raise brings us closer to a world where every child can grow up cancer-free.
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  &lt;a href="https://solvingkidscancer.rallybound.org/2024-lace-up-for-kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Register-Today-Button.png" alt="A yellow button that says `` register today '' on a white background."/&gt;&#xD;
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           Source:
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           1Childhood Cancer Fact Library – 
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    &lt;a href="https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/" target="_blank"&gt;&#xD;
      
           https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/
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      <pubDate>Sun, 08 Aug 2021 13:11:37 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/7-ways-to-help-during-childhood-cancer-awareness-month</guid>
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      <title>Focus on the Good Things: Better Treatments and Cures for Childhood Cancer</title>
      <link>https://www.solvingkidscancer.org/blog/focus-on-the-good-things-better-treatments-and-cures-for-childhood-cancer</link>
      <description />
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           Evan always focused on the good things.
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           Evan could describe everything there was to know about being a firefighter. He knew how to prepare the equipment, jump into the turnouts, pull on his trusty boots and rescue others from the blazing flames. Not really, of course, but he could play the character so convincingly you would almost believe it to be true.
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          Wendy and Gavin, Evan’s parents, captured it all on video, but they can’t bring themselves to watch the clips. “The thought of watching them is just too much to bear,” said Wendy.
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           At three, on a hot Labor Day weekend, Evan insisted – like every other day, hot or cold – on wearing his tall, rubber firefighter boots. The kind that went all the way up to his knees. 
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           “We were putting them on and he says, ‘Mommy, my legs hurt.’” recalls Wendy. “My first thought was, ‘Oh, you’ve been wearing these boots for the last couple of days. Maybe we should give these a little rest and put on your sneakers.’” That moment is forever etched in Wendy’s memory.
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           In the coming days, the pain worsened. Then, after several trips to the pediatrician’s office in constant pain, Evan’s doctor decided to order a CT scan. These were not growing pains, as originally suspected. Evan had a CT scan, and no sooner did Wendy leave the hospital’s parking lot when her phone rang. It was Gavin. “We have to go to the children’s hospital. There’s a mass in Evan’s abdomen.”
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           “He was three. And I was so glad that he was asleep in the back seat because I was a mess on the way home, just thinking. A mass? A mass in his abdomen? A mass? Over and over again,” Wendy recalls. “It’s just the most shocking, terrifying thing to learn.”
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           When Wendy and Evan returned home, she started packing a suitcase. “What are we doing?” he asked. And Wendy said, “Oh, we’re going to go to the hospital to find out how we can make that pain in your legs stop for you.” Then she gently shifted his attention to focus on something good. “Let’s pack up your favorite book, and your favorite stuffed animal.”
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           Evan was soon diagnosed with stage IV neuroblastoma – a rare childhood cancer of the sympathetic nervous system, the network of nerves that carries messages from the brain to the rest of the body. But the story of Evan extends far beyond neuroblastoma. Cancer didn’t define his life.
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           “He had this quiet resolve about him in the face of this epic challenge,” remembers Gavin. And much of that resolve likely came from Wendy’s gentle guidance. She encouraged him to always focus on the next, good thing to come.
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           Evan spent the next four years traveling with his parents between Children’s National in Washington D.C., Memorial Sloan Kettering, Children’s Hospital of Philadelphia, and even a hospital in Florida where he had an emergency brain surgery during a vacation.
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           “When we would travel to New York or Philadelphia for treatments, we would focus on the other things that we’d do when we were there,” said Wendy. “He had a favorite diner where we went to dinner almost every night that we were in New York.” 
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           “And he had a favorite pizza place,” said Gavin 
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           “Yes, his favorite pizza place,” remembered Wendy. “So, we would say, ‘Hey, let’s go get pizza and go play on the stone slide in Central Park,’ and Evan would say, ‘Okay, sounds good!’”
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           And even though the immunotherapy that Evan endured while in New York was described by his parents as “horrific, unimaginable torture,” Evan would ask, “When are we going to New York again?” 
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           He learned to focus on the good things.
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           After a four-year battle defined by courage, treatment failed Evan in 2010 and he passed away at the age of seven.
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           As his life was not defined by cancer, neither is his legacy. “Evan was pure joy. He was joy personified and innocent and just a wonderful little soul,” said Wendy. And his parents wanted to continue to share a little bit of Evan’s joy with others.
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&lt;div data-rss-type="text"&gt;&#xD;
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           Gavin and Wendy founded the EVAN Foundation to fund childhood cancer research through partnerships with organizations such as Solving Kids’ Cancer. But just as Wendy always coaxed Evan to focus on the good things, so does their organization. In nine hospitals, they fund a Treats &amp;amp; Treasures Cart – a simple program that makes a huge difference for kids. Kids hear the cart rolling down the hall, and joy ensues. They get to choose any treat or treasure on the cart. “They’re in an environment where everything is being done to them,” said Gavin. “They get a little bit of an opportunity to be in charge.”
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            ﻿
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           Wendy and Gavin, are in turn, also blessed. “Even without talking about him, it’s just saying his name. Once in a while, they’ll ask about Evan, but just saying, ‘We’re with the EVAN Foundation,’ that’s Evan to that room. If we get a smile on somebody’s face, we feel like there’s some of Evan there.”
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&lt;div data-rss-type="text"&gt;&#xD;
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           Evan’s parents encourage others to support childhood cancer research. 
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&lt;div data-rss-type="text"&gt;&#xD;
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           “I am in awe of any parent who has endured the worst tragedy imaginable and then focused their energy on advocating for other families,” said Gavin.
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      &lt;br/&gt;&#xD;
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           And Gavin and Wendy remain passionate supporters – helping and encouraging other families while advocating and fundraising for better treatments and cures.
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    &lt;/span&gt;&#xD;
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           “It’s up to us. These kids are our future, and cancer is the number one cause of death by disease in children. There’s no better way to impact a child’s life than by supporting a childhood cancer organization,” said Gavin. “I’m going to see Evan at some point, and I want to be able to look him in the eye and say that I did everything I could for kids like him.” 
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    &lt;/span&gt;&#xD;
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      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           So, they continue to fight and focus on the good things – and the very best thing would be the discovery of better treatments and cures for kids with cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/skc-funded-projects/" target="_blank"&gt;&#xD;
      
           Please see the research
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            that the EVAN Foundation and Solving Kids’ Cancer are collaboratively supporting because every kid deserves to grow up.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Evan-Lindberg.png" length="1239603" type="image/png" />
      <pubDate>Sat, 07 Aug 2021 05:35:51 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/focus-on-the-good-things-better-treatments-and-cures-for-childhood-cancer</guid>
      <g-custom:tags type="string" />
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    <item>
      <title>Osteosarcoma in Children</title>
      <link>https://www.solvingkidscancer.org/blog/osteosarcoma-in-children</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           What is Osteosarcoma?
          &#xD;
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           Osteosarcoma is a rare, malignant type of 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/sarcoma-in-children/#:~:text=Solving%20Kids%E2%80%99%20Cancer%20believes%20that%20pushing%20the%20limits,%E2%80%94%20because%20every%20kid%20deserves%20to%20grow%20up%C2%AE." target="_blank"&gt;&#xD;
      
           pediatric sarcoma
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            of the bone. While it is an uncommon cancer, it is one of the most common types of pediatric bone tumors. It is diagnosed in approximately 400 children, older teens, and young adults annually in the United States.1
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           Osteosarcoma usually strikes boys more often than girls and often presents in individuals between 10-20 years of age. Tumors usually first appear in the wider ends of the long bones in the body; they most often manifest in the humerus bones in the arms and the femur and tibia in the legs. In some cases, it can originate in the flat bones that surround and protect organs like the pelvis, ribs, and skull.
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           An aggressive type of childhood cancer, osteosarcoma can spread quickly to other parts of the body, like other bones, tissues, and organs (primarily the lungs). In up to 20% of patients, osteosarcoma tumors have already spread from the origination site by the time of initial diagnosis.
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           Osteosarcoma Symptoms, Causes and Risk Factors 
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           The cause of osteosarcoma is usually unknown, but recent research suggests that genetic factors may play a role in addition to patients previously treated with radiation therapy for other cancers. Most specifically, patients previously treated for cancers like retinoblastoma and other childhood cancers, as well as having a family history with various kinds of cancer (breast, leukemia, brain tumors, and other kinds of soft-tissue tumors), can increase a child’s chances of developing this type of bone cancer. Additionally, 3-4% of children diagnosed with osteosarcoma have germline mutations that are associated with a predisposition to developing childhood cancer early in life.
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    &lt;/span&gt;&#xD;
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           This bone cancer can mask itself as a common childhood injury or growing pain, which can delay diagnosis. However, there are sometimes additional osteosarcoma symptoms:
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                • Pain, tenderness, swelling, and/or stiffness in the affected area is one of the most common bone cancer symptoms
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                • Progressively worse, radiating pain extending outward from the tumor site 
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                • Aggressive pain that may awaken the child from a deep sleep
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                • Weakened bones and/or fracture
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                • Fatigue, weight loss, and/or anemia
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                • Loss of motor function and/or decreased ability to walk
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&lt;div data-rss-type="text"&gt;&#xD;
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           Diagnosis of Osteosarcoma Childhood Cancer
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           Getting a rapid diagnosis is important to quickly begin a treatment plan and prevent the possibility of spread. Clinical specialists can use a variety of tests to diagnose and assess the disease progression:
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                • 
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    &lt;a href="https://www.chop.edu/treatments/general-radiography-x-ray" target="_blank"&gt;&#xD;
      
           X-rays
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                • 
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    &lt;a href="https://www.chop.edu/treatments/magnetic-resonance-imaging-mri" target="_blank"&gt;&#xD;
      
           Magnetic resonance imaging (MRI)
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                • Computed tomography (CT) scan
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                • 
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    &lt;a href="https://www.chop.edu/treatments/eos-x-ray-imaging-system" target="_blank"&gt;&#xD;
      
           EOS imaging
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                • Radioisotope bone scans, which can help locate areas of abnormal growth
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                • 
          &#xD;
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    &lt;a href="https://www.chop.edu/treatments/positron-emission-tomography-pet" target="_blank"&gt;&#xD;
      
           Positron emission tomography (PET) scan
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                • Blood tests
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                • 
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    &lt;a href="https://www.chop.edu/treatments/biopsy" target="_blank"&gt;&#xD;
      
           Needle biopsy
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&lt;div data-rss-type="text"&gt;&#xD;
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           Treatment and Prognosis of Osteosarcoma Bone Cancer
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           Malignant bone cancer tumors like osteosarcoma require very active and aggressive treatment that usually includes a combination of surgery and chemotherapy.
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                • Surgery:
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            Surgery is used to remove osteosarcoma tumors to try to restore the function of the affected area. Up to 90% of children with this type of bone cancer are eligible for reconstructive, limb-saving surgery through a variety of techniques.
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                • Chemotherapy: 
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           Osteosarcoma patients always undergo targeted chemotherapy. Depending on the case, the patient may be administered chemotherapy before and/or after surgery to prevent spread.
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&lt;div data-rss-type="text"&gt;&#xD;
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           As with all childhood cancers, the long-term prognosis and survival vary from case to case. However, rapid medical assessment and an aggressive therapy plan can improve the prognosis. 
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                • If the affected area is localized and has not spread to other areas of the body, the long-term survival rate tends to be 70 to 75%.
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                • If the osteosarcoma has spread to the lungs and/or other bones at diagnosis, the long-term survival rate is around 30%.
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           Childhood Cancer Research in Osteosarcoma
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           Continued clinical research of osteosarcoma helps scientists study the behavior and biology of osteosarcoma along tumor cell lines and laboratory models. Additionally, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            provide the opportunity to test new treatments and therapies that may be more effective in treating osteosarcoma. Some of the latest research in osteosarcoma include:
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  &lt;p&gt;&#xD;
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                • The potential use of 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/combining-decitabine-vaccine-therapy/" target="_blank"&gt;&#xD;
      
           immunotherapy
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and targeted therapies such as tyrosine kinase inhibitors.2
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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                • Examination of genetic markers that can cause chemotherapy resistance, highlighting the need for more research to develop effective treatments.3
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                • Hydrogels loaded with chemotherapeutic drugs that showed promising results through site-specific therapy.4
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  &lt;p&gt;&#xD;
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                • A study comparing the clinical outcomes of six different drugs, examining how future trials can be designed to improve response rates and decrease toxicity.5
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           By investing in early investigational research, both pre-clinical and clinical for this bone cancer, Solving Kids’ Cancer is dedicated to increasing the prognosis for children with pediatric osteosarcoma. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Your gift to Solving Kids’ Cancer changes the lives of children with osteosarcoma by making better treatment options possible for the very youngest of cancer patients — because every kid deserves to grow up®.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_osteosarcoma&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_osteosarcoma&amp;amp;utm_medium=blog&amp;amp;utm_content=osteosarcoma_in_kids" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/HELP-SOLVE-KIDS-CANCER.png" alt="A pink button that says `` help solve kids ' cancer ''"/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
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  &lt;h6&gt;&#xD;
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           Sources
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  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Educational Case: Primary Osteosarcoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6343432/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6343432/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 Osteosarcoma: Current Concepts and Evolutions in Management Principles – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/37109122/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/37109122/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           3 A Systematic Review of the Heterogenous Gene Expression Patterns Associated with Multidrug Chemoresistance in Conventional Osteosarcoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/37107591/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/37107591/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           4 The Use of Hydrogels for the Treatment of Bone Osteosarcoma via Localized Drug-Delivery and Tissue Regeneration: A Narrative Review – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/37102886/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/37102886/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           5 Recent advances on anti-angiogenic multi-receptor tyrosine kinase inhibitors in osteosarcoma and Ewing sarcoma 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://pubmed.ncbi.nlm.nih.gov/36994209/" target="_blank"&gt;&#xD;
      
           https://pubmed.ncbi.nlm.nih.gov/36994209/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Osteo.png" length="2078539" type="image/png" />
      <pubDate>Fri, 06 Aug 2021 11:28:08 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/osteosarcoma-in-children</guid>
      <g-custom:tags type="string" />
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    <item>
      <title>Comparing ATRT, DIPG and ETMR Pediatric Brain Tumors</title>
      <link>https://www.solvingkidscancer.org/blog/comparing-atrt-dipg-and-etmr-pediatric-brain-tumors</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Pediatric brain tumors are the second most commonly diagnosed cancer in children, and the second leading cause of cancer death among children and infants. Despite significant improvements in outcomes for some pediatric cancers, when current treatments such as chemotherapy, surgery, or radiotherapy fail, there is still an unacceptably low chance of survival, in part because the most current and innovative research is prioritized for adults.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           While there are many different types of brain tumors that affect children, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/rare-brain-tumors-in-kids/" target="_blank"&gt;&#xD;
      
           rare brain tumors
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are often the most difficult to treat, in part because so little research has been done on them, and because they are typically more fast-growing and aggressive.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/the-most-vulunerable-768x505.jpg" alt="A little girl is sitting in a crib in a hospital room."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h1&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Rare Brain Tumors in Children
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h1&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The following rare brain tumors are among those with the lowest survival rates, but with new clinical trial funding, these toughest of childhood brain tumors can be studied and treated more successfully:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
               • Atypical Teratoid Rhabdoid Tumors (ATRT)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
               • Diffuse Intrinsic Pontine Glioma Tumors (DIPG)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
               • Embryonal Tumors with Multilayered Rosettes (ETMR)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Atypical Teratoid Rhabdoid Tumor (ATRT)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Atypical Teratoid Rhabdoid Tumors
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are very aggressive tumors that occur in the central nervous system and generally form in the cerebellum or brainstem. ATRTs are typically associated with an abnormality in a specific gene that helps prevent tumor growth in the body.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Grade IV: the most aggressive
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Occurs in the cerebellum or brainstem
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Presents in less than 3% of pediatric brain tumors
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Usually develops by age three but can occur in older children
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Existing treatments include surgery, chemotherapy, and radiation
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ATRT Symptoms
           &#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Headaches, particularly in the morning or that subside after vomiting
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Fatigue, extreme tiredness
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Nausea and vomiting
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Twitches or unusual facial or eye movements
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Issues with balance, coordination, or walking
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Changes in behavior or personality
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Hydrocephalus (swelling of the head due to fluid build-up around the brain) in infants
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ATRT Treatments
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           Treatments for ATRT can vary for each person based on the characteristics, location, and grade of the tumor. Often, the cancer is treated with a combination of existing treatments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Surgery:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Surgery is often the first treatment used to both confirm the ATRT tumor type and attempt to safely remove as much of the tumor as possible. Depending on the location of the tumor and how widespread it is, surgery may not be possible to remove the tumor without damaging other parts of the brain.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Chemotherapy:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Chemotherapy is often used in combination with surgery to prevent additional growth and spread of the tumor.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Radiation:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Radiation uses high blasts of radiation waves to precisely target ATRT and can be used in conjunction with chemotherapy to target cancer cells after surgery. However, it is not typically used in children under three years of age due to its intensity and possible damage to nearby tissues around the tumor.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Diffuse Intrinsic Pontine Glioma (DIPG)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Diffuse Intrinsic Pontine Glioma Tumors
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are located in the pons (middle) of the brainstem. DIPG tumors are incredibly difficult to treat due to their location in the brainstem, which controls many important functions such as breathing, blood pressure, and heart rate.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Usually Grade III or IV by diagnosis
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Occurs in the brainstem/pons
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Presents in 10-20% of children with brain tumors
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Usually develops between ages five and 10 but can occur in older children
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Existing treatments include chemotherapy and radiation
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           DIPG Symptoms
           &#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Weakness in arms and legs
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Facial weakness and drooping
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Problems with chewing and swallowing
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Vision changes/eye movements, such as double/blurred vision and uncontrolled movements
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Headaches, particularly in the morning or that subside after vomiting
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Nausea and vomiting
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Issues with balance, coordination or walking
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Changes in behavior or personality; irritability, aggravation, anxiety
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           DIPG Treatment
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Radiation:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Unfortunately, radiation therapy is one of the only effective treatments used to shrink DIPG tumors in children older than three years of age. Surgery is not possible without the great risk of damaging key parts of the brainstem. While chemotherapy is sometimes used in conjunction with radiation, there is little evidence, to date, to support that it increases the overall survival rate.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Embryonal Tumors with Multilayered Rosettes (ETMR)
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Embryonal Tumors with Multilayered Rosettes
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are very aggressive tumors that usually form in the largest part of the brain, the cerebrum. These tumors develop from embryonic cells that remain in the brain after the child has been born and are the rarest of infant and childhood brain tumors with the lowest survival rate.
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Usually Grade IV
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Typically occurs in the cerebrum but can be found in the brainstem or spinal cord
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Accounts for 2% of pediatric brain tumors
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Develops in infants and children under four years of age
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Existing treatments include surgery, chemotherapy, radiation
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ETMR Symptoms
           &#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Muscular weakness or partial paralysis of facial muscles or one side of the body
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Loss of balance, trouble walking, lack of coordination, or slow speech
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Seizures
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Headaches, particularly in the morning or that subside after vomiting
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Nausea and vomiting
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Unusual sleepiness or change in energy level
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Double vision or other eye problems
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      &lt;br/&gt;&#xD;
      
               • 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Changes in behavior or personality; irritability, aggravation, anxiety
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ETMR Treatments
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Surgery:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Typically, surgery to remove, partially remove or biopsy the tumor is the first course of action for ETMR.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Chemotherapy:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Chemotherapy is usually recommended after surgery to target any remaining cancer cells.
           &#xD;
      &lt;br/&gt;&#xD;
      
           Radiation: Radiation is often one of the most effective treatments for children with ETMR. However, radiation can also have long-term devastating effects on the developing brain, so physicians will consider the patient’s age, the location of the tumor and the tumor type before determining to use radiation as a treatment option.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Funding new treatments
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Despite major improvements in childhood cancer therapies and survival rates, pediatric brain tumors like ATRT, DIPG, and ETMR are the toughest to treat and overcome, even with a combination of the most aggressive traditional treatments. At Solving Kids’ Cancer, we believe that clinical trials of new therapies are vital to continuing the fight against these devastating childhood cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           We prioritize and fund innovative preclinical research and early phase clinical trials with strong rationale for potential benefit to children with poor prognosis cancers. Through collaboration with key stakeholders including scientists, clinicians, regulatory experts, and industry representatives, we aim to accelerate impactful advances globally.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Our projects like 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/nivolumab-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           Can Nivolumab Treat Childhood Brain Tumors?
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/first-in-class-immunotherapy-for-relapsed-and-refractory-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           Immunotherapy for Relapsed and Refractory Pediatric Brain Tumors
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            have helped to expand possible treatment options for children with the worst of the worst childhood cancers. With a focus on innovative treatments, such as immunotherapy, and collaboration across the globe, Solving Kids’ Cancer has funded work in more than 110 cancer centers across 15 countries to date. Funded projects include 14 international studies and represent collaborations with 20 different charity partners.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Pushing the limits of innovation can change the world for children with rare pediatric brain tumors. May is Brain Tumor Awareness Month. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_comparing_brain_tumors_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_comparing_brain_tumors_1&amp;amp;utm_medium=blog&amp;amp;utm_content=comparing_brain_tumors_cta_1" target="_blank"&gt;&#xD;
      
           Your gift to Solving Kids’ Cancer
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            provides kids with brain tumors and their families hope of discovering better treatment options — because every kid deserves to grow up®.
           &#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_comparing_brain_tumors_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_comparing_brain_tumors_2&amp;amp;utm_medium=blog&amp;amp;utm_content=comparing_brain_tumors_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Fund-768x256.png" alt="A pink button that says `` fund a treatment '' on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/the-most-vulunerable-768x505.jpg" length="51681" type="image/jpeg" />
      <pubDate>Fri, 21 May 2021 10:52:12 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/comparing-atrt-dipg-and-etmr-pediatric-brain-tumors</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Comparing+dipg-+etmr-+atrt.png">
        <media:description>thumbnail</media:description>
      </media:content>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/the-most-vulunerable-768x505.jpg">
        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>Using Research Advocacy to Improve Outcomes</title>
      <link>https://www.solvingkidscancer.org/blog/using-research-advocacy-to-improve-outcomes</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
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           Patient-driven care has become a recognized component of the approach that stakeholders use to advance therapies. The perspective and voice of the patient are widely seen as a valuable resource in identifying unmet needs and steering the direction of medical research. Individuals and entities engaged in this role are known as Research Advocates and can often be found seated alongside industry, regulatory, and academic research leadership at international meetings and on consortium committees around the world.
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           What is Research Advocacy?
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           The concept of “Research Advocacy” was first effectively demonstrated by HIV advocates in the 1980s when patients who also held a level of scientific expertise demanded a seat at the table with the NIH and a say in the design of clinical trials testing new drugs in dying patients. Researchers soon learned that this arrangement offered them something in return: greater access to patients for clinical trial enrollment, better patient education concerning the disease and treatments, and new avenues for funding. In the 1990s, the growth and influence of powerful breast cancer organizations fully established the impact of research advocacy. The National Breast Cancer Coalition’s LEAD project developed an intensive and highly effective advocacy program designed to educate, train and activate an army of research advocates to influence the research agenda in the clinical research community. Other disease associations have taken note of and replicated this success. However, the concept of research advocacy remains largely underutilized within the pediatric cancer community. There are many reasons for this: pediatric cancer is not a single disease – rather comprised of a dozen distinct diseases; not many childhood cancer survivors are trained scientists; parents tend to be younger and overwhelmed with a gravely ill child; and, to a certain extent, the mentality to “do what your doctor says” remains.
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           Solving Kids’ Cancer has long championed this movement in the pediatric cancer space, but much remains to be done. Effective research advocacy requires the following basic areas of expertise and activity:
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                 • Robust knowledge of the disease
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                 • Understanding the treatment, including the history and the current landscape
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                 • Strong aptitude for advances in basic science and clinical science
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                 • Recognition for expertise and input in all stakeholder environments: academic, industry, nonprofit, and regulatory 
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                  agencies, consortiums, and societies
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                 • Constant surveillance of patient community and experience
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           Research advocacy has been part of Solving Kids’ Cancer’s path to becoming an internationally recognized nonprofit giving voice to cancer families and working to become a respected entity that has an influence on and broad support from all crucial stakeholders including families, academic researchers, nonprofit partners, coalitions and consortiums, industry, and regulatory agencies.
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           The Hierarchy of Study Groups
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           The 
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           worldwide status of cancer treatment for children
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            is controlled primarily by two large study groups — the Children’s Oncology Group (COG) in the U.S. and the International Society of Paediatric Oncology (SIOP) in Europe. These study groups each conduct clinical trials in hundreds of hospitals around the world. Considering that there are more than a dozen distinct types of pediatric cancers that altogether comprise just 1% of all cancers, these large study groups were formed to conduct clinical trials which would evolve and improve standard treatments. However, the small number of patients in each disease type creates a limited bandwidth for conducting clinical trials. These study groups are intentionally strategic about the type and number of concurrently conducted trials to prevent competition for patients.
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           Within this structure are subgroups — consortiums that conduct trials which then feed into the two large study groups for validation in phase III randomized trials. These consortiums (often consisting of 10 – 20 institutions) are sanctioned by the top-level COG or SIOPEN study groups and often each disease group is run by the same leadership. For example, the leadership of the New Approaches for Neuroblastoma Therapy (NANT) consortium consists of many of the same individuals in the COG neuroblastoma steering committee. This structure results in relatively tight control over the evolution and advances in treatments.
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           Money alone cannot shift this hierarchical system. Even acting as a major funding source does not ensure control over the research agenda. While the research community may favor funders who contribute without attaching conditions, evidence shows that involving patient advocates significantly enhances the quality of medical research—a practice research leaders are now more openly welcoming. In a recent expert forum, a discussion emerged around 
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           betting sites not on Gamstop
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           , highlighting how these platforms operate outside traditional structures to meet user demands. This example illustrated that, in both fields, influence stems from respected expertise and a strong connection to the community, backed by a solid, evidence-based rationale rather than mere financial power.
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           What’s Required
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           A requirement for recognition of expertise is active representation in the established framework of study groups, regulatory agencies, and stakeholders such as academia, scientific societies, charity coalitions, and industry: NCI, COG, NANT, FDA, NCRI, ITCC, SIOP, EMA, CAC2, ACCO, SITC, AACR, ASCO, etc (see table 1.). Most of these entities have existing working groups or committees that offer a role for patient advocates. These roles themselves can vary widely, from creating and advancing policy changes, raising awareness, to influencing clinical trial design. Utilizing these opportunities to represent the patient and family perspective is the first step to gaining influence in the research agendas of these entities that make up the framework of the pediatric cancer landscape. 
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           (see Solving Kids’ Cancer’s representation)
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           Research Advocacy is necessary for families and nonprofit leadership to ensure that they have a voice in the direction of pediatric cancer therapeutic development. It’s an arduous undertaking, but one that is critical to the advancement of disease treatment and improved survival. 
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           Solving Kids’ Cancer takes the necessary steps to find, fund, and advocate for breakthrough treatment options to cure children with the most fatal childhood cancers — because we believe that every kid deserves to grow up®.
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           Get the Latest News
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           Stay up to date on our work to accelerate next-generation treatments for the next generation. 
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      <pubDate>Fri, 07 May 2021 04:24:11 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/using-research-advocacy-to-improve-outcomes</guid>
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      <title>Grant Awarded for Research into Identifying and Treating Chemotherapy-Resistant Neuroblastoma</title>
      <link>https://www.solvingkidscancer.org/blog/chemotherapy-resistant-neuroblastoma</link>
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           Solving Kids’ Cancer with partners: Solving Kids’ Cancer UK, Solving Kids’ Cancer in New York, Joining Against Cancer in Kids (J-A-C-K), ZOE4LIFE, Merryn Lacy Trust, and the Oscar Knox Fund have awarded $650,000 to the Children’s Hospital of Philadelphia (CHOP) and collaborating institutions for research into identifying and treating neuroblastoma in newly diagnosed children that are resistant to current standard chemotherapy.
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           The study spanning two years leading to the design and development of a new clinical trial will involve a trans-Atlantic collaboration of researchers from CHOP; Icahn School of Medicine at Mount Sinai; Institute of Cancer Research, London; Texas Tech University Health Sciences Center; Seattle Children’s Hospital and Princess Máxima Center in the Netherlands.
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           Indolent or refractory neuroblastoma is a clinically well-known sub-type of the disease that shows little or no response to currently available first-line treatments, remaining stable for some time before eventually beginning to progress. It often affects older children and young adults, giving them a prolonged battle with the disease with very poor overall survival. Until now, this group of patients has been mostly overlooked within research, with most clinical trial options being lumped-in with trials designed for cases of relapsed neuroblastoma- often showing little benefit for those with indolent disease. A major hurdle to improving outcomes for these patients has been the inability to define this type of disease at a molecular level to enable them to be identified at diagnosis – an obstacle this new research is seeking to address.
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           In light of these unmet clinical needs most difficult patient circumstances, our collaborative 2019 challenge grant called for proposals specifically targeted to find solutions for refractory disease, to our knowledge the first of its kind to focus solely on this group of children. Correspondingly, this study will focus on so-called Telomere Maintenance Mechanisms that drive tumor growth, in particular Alternative Lengthening of Telomeres (ALT) and ATRX.
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           Within this project, the researchers have 3 key aims to address the unmet needs of these children and young people; firstly, to develop a clinical tool that can detect biomarkers for indolent neuroblastoma, with hopes to use this to identify these patients at diagnosis. In conjunction with this, they will create robust laboratory models of the sub-group which do not currently exist and will provide a strong basis for any future research in this area. Finally, they will look at preclinical testing of small molecule therapies in combination with existing immunotherapy in the hopes of finding better responses from the highly treatment-
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           resistant disease. At the end of two years, the team hopes to have a new clinical trial for this group of patients ready to take forward for funding.
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           “There are no treatments or trials specifically for children with refractory or chemo-resistant neuroblastoma,” said Scott Kennedy, Executive Director of Solving Kids’ Cancer. “Today, kids often have to endure several rounds of toxic chemotherapy only to find out that the cancer is resistant due to a specific biology type. Our hope is that this innovative program will change this reality. Through this work, we envision a day when children will get the right treatment upon diagnosis, and the cancer will no longer be resistant to these newly identified tailored treatments. “
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           The research team have clear intent to develop the results into clinical trials focused on indolent neuroblastoma, with collaboration from Dr. Julie Park, Director of the New Approaches to Neuroblastoma Therapy consortium, and Prof. Max van Noesel from the Princess Máxima Center. As a charity that is committed to bringing new treatments to the clinic, providing hope for families, we are incredibly excited to see how this project progresses.
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           Principal Investigator:
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           Dr. John Maris of Children’s Hospital of Philadelphia
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           Research Institutions:
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            Children’s Hospital of Philadelphia, Institute of Cancer Research, Ichan School of Medicine at Mount Sinai, Texas Tech University Health Science Center, Seattle Children’s Hospital, Princess Máxima Center
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           Project Partners:
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           Joining Against Cancer in Kids (J-A-C-K), Merryn Lacy Trust, Oscar Knox Fund, Solving Kids’ Cancer UK, ZOE4LIFE, Band of Parents, Children’s Neuroblastoma Cancer Foundation
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           Total Award:
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            $650,000
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           Date of Award:
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           April 2021
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      <pubDate>Wed, 21 Apr 2021 13:18:09 GMT</pubDate>
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      <title>International Collaboration Speeds Progress in Childhood Cancer Research</title>
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           Despite major progress over the past several years, cancer is still the number one cause of death by disease in children past infancy in the developed world. In fact, of the approximately 360,000 children and adolescents across the globe diagnosed with cancer each year, 80% lack access to quality treatments and cures, highlighting the need to establish global networks to improve diagnoses and care. 
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           The availability of effective and less-toxic treatments for childhood cancer remains an unmet clinical need. Cancer drug development for children often extensively leverages adult drug discovery and development, meaning that the evaluation and approval of new anticancer therapies for children lag significantly behind those for adults. International collaboration, transparent communication, and standardization of care can accelerate the progress of these therapies for our youngest generations. 
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           Challenges of Global Cancer Research 
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           While a seemingly simple solution, international research collaboration, and drug development are complicated by several factors. 
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           • Differing regulations across different countries. 
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           In order to facilitate clinical trials across multiple countries, many national and regional regulatory authorities have heightened the level of oversight required to conduct a clinical trial. This means that in order to conduct an international trial, a complex array of differing regulatory requirements may apply. Interestingly, this complexity is not unlike the challenges faced by platforms like 
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           Top Nederlandse goksites
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           , which must navigate varying regulatory landscapes to operate legally and ensure consumer protection across different jurisdictions. For example, the U.S. Department of Health &amp;amp; Human Services mandated that research funded by the United States but taking place at sites outside of the U.S. must submit documentation certifying that each research site observes the Declaration of Helsinki on Ethical Principles for the Conduct of Research on Human Subjects and has an independent ethics committee. Similarly, the National Cancer Institute of Canada placed regular on-site audits on trials it supports. While the aim of these regulations is to ensure the safety and ethics of clinical trials, the vast and differing protocols make it complicated to put together an international trial approved by all entities, can delay trial implementation, and may deter funders.
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           • Early versus late phase trials.
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            While International late-phase trials are more common due to the large number of patients needed to fulfill the requirements of the study, early phase trials, used to determine safety and dosage, may only require a couple of dozen patients in total. As such, international early phase trials face unique and costly challenges in overcoming regulatory hurdles in multiple countries for what may end up being only a few patients at each site.
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           • Varying access to resources.
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            Cancer cases in low- and middle-income countries (LMICs) account for nearly 80% of cases worldwide, yet these countries have less than 5% of global resources for cancer care and control. In LMICs, survival of children with cancer is directly proportional to several health indicators, including the number of physicians and nurses per 1,000 population, availability of specialized diagnostic equipment and therapies, and annual government health care spending per person.
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           • Differing opinions and licensing for drug development
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           . Pharmaceutical companies across the globe may conduct clinical trials on their own or in partnership with additional stakeholders. However, typically, the pharmaceutical company is more focused on funding trials that will provide the data necessary for a licensing application, while other stakeholders may want to test agents from competing companies in the same trial. In many cases, this can mean that a trial addressing a question of great importance to oncologists and patients may be of no interest to the pharmaceutical industry.
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           • Lack of knowledge of total disease burden
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           . Often due to poor infrastructure and lack of access to resources such as widespread internet or transportation, LMICs are unable to establish national patient registries in order to track the total number of diagnoses across the population. This contributes to a global underrepresentation of the prevalence of childhood cancer and varying standards for disease diagnosis and staging, making it harder to translate gains achieved in higher-income settings to all children worldwide.
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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      &lt;br/&gt;&#xD;
      
           • Difficulty of tumor and specimen collection.
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    &lt;span&gt;&#xD;
      
            As the field of cancer therapeutic research becomes more advanced, the need to collect and analyze biological specimens of clinical trial participants is becoming more critical. However, shipment of these specimens across international borders may require differing regulations or maybe entirely forbidden. In some cases, parallel banks could be set up across countries, but this would require standardization and quality assurance procedures to ensure all specimens are treated the same way. 
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  &lt;h3&gt;&#xD;
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           Benefits of International Research Collaboration
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&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/International-Collaboration-Boon-or-Bane--750x300.jpg" alt="A group of business people are shaking hands over a table."/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           While the factors above highlight the challenges of global collaboration in cancer research, the potential benefits to all stakeholders far outweigh these hindrances. 
          &#xD;
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           • Larger sample sizes for trials.
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    &lt;span&gt;&#xD;
      
            Because so many childhood cancer research trials study incredibly rare cancer types or subtypes, it can be difficult to find a statistically significant number of participants diagnosed with the specific biological makeup the trial is hoping to investigate. International collaboration means patients from across the globe have access to clinical trials for which they are eligible. Larger sample sizes of trial participants cut down the time it takes to determine the efficacy of a new treatment, ultimately helping to speed up the approval process for experimental treatments.
          &#xD;
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           • Scientific breakthroughs and discoveries.
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    &lt;span&gt;&#xD;
      
            Most rare diseases, including childhood cancers, can be genetic in origin or result from a dysfunction of a singular pathway, such as a gene or protein. A better understanding of a particular defect can lead to much broader applications of the research findings, serving as a model for other conditions that may involve that pathway.
          &#xD;
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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           • Standardization of care.
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    &lt;span&gt;&#xD;
      
            Global collaboration necessitates standard language and protocols for diagnosis, classification, trial design, and endpoints, diagnostic tools such as imaging, treatment options such as surgical procedures or chemotherapy administration, and population-based diagnostic tracking through a national registry. This standardization ensures that patients can receive the same quality of care, regardless of location.
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  &lt;/p&gt;&#xD;
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           • Fewer duplicative trials.
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            When international stakeholders are transparently partnering on various projects, it reduces the chance of designing a trial for a treatment that has already been tested, ensuring the maximum amount of resources — funds, therapeutic agents, participants, etc. — can go towards identifying and distributing the most effective treatments.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           • Expanded access to data. 
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           International partnership requires transparency and coordination to be successful. Sharing data — whether from a large clinical trial, genomic study, or national disease registry — allows the best and brightest across the globe to build upon each others’ work more quickly as they search for better treatments and a cure.
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  &lt;/p&gt;&#xD;
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           • Faster distribution. 
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    &lt;span&gt;&#xD;
      
           Simply put, all of these factors combine to streamline drug development. Larger trials mean more efficient findings more quickly; expanded access to data and sharing of scientific discoveries means more innovation to develop more effective, less toxic therapeutics; transparent communication cuts back on duplicative trials to enhance resources available, and standardizing procedures mean less red tape for regulatory restrictions and licensing agreements. 
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Ultimately, strengthening international collaboration can help maximize resources to ensure that every child with cancer — regardless of where they live — can grow up. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Leading the Way in Global Collaboration
          &#xD;
    &lt;/strong&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer believes that the establishment of global networks is essential to improve childhood cancer diagnosis and care. Through research advocacy on behalf of those diagnosed and bold investments in novel therapies, Solving Kids’ Cancer leads the path to global collaboration by encouraging international sites for clinical projects when feasible. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For example, with our UK counterpart, we initiated a call for proposals to launch an international combination immunotherapy trial. This collaboration is supporting an 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/nivolumab/" target="_blank"&gt;&#xD;
      
           innovative trial
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    &lt;span&gt;&#xD;
      
            testing a new three-pronged approach using 
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    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/therapeutic-antibody-treatment-options-for-relapse-refractory-neuroblastoma/" target="_blank"&gt;&#xD;
      
           miBG radiotherapy with two antibodies to treat relapse/refractory neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . The trial is conducted through an international partnership between the U.S., UK, and Germany. Additionally, we are aiming to improve the treatment of newly diagnosed children with neuroblastoma. Led by our UK counterpart, we initiated another call for an international frontline trial that has resulted in the first-ever collaboration between the Children’s Oncology Group (COG) and the International Society of Pediatric Oncology – Neuroblastoma (SIOPEN) to introduce a new targeted agent into frontline therapy for children with ALK mutations that will begin in 2021. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/titan/" target="_blank"&gt;&#xD;
      
           This collaboration
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    &lt;span&gt;&#xD;
      
            is jointly funded by seven U.S., UK, and EU charities.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer focuses on meeting the unmet clinical needs of children living with the most fatal pediatric cancers. In November 2020, we co-hosted the first-ever 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/" target="_blank"&gt;&#xD;
      
           Neuroblastoma Parent Global Symposium
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , bringing together scientists, medical professionals, patient families, and funders from across the world to learn about new treatments and progress. By spearheading international partnerships and helping to develop national and regional frameworks for collaboration, we are speeding up the progress of new treatments and cures. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Your support can help strengthen international partnerships to overcome barriers to collaboration and improve cancer treatment for children around the world. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_international_collaboration_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_international_collaboration_1&amp;amp;utm_medium=blog&amp;amp;utm_content=international_collaboration_cta_1" target="_blank"&gt;&#xD;
      
           Give today
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    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_international_collaboration_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_international_collaboration_2&amp;amp;utm_medium=blog&amp;amp;utm_content=international_collaboration_cta_1" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Fund-768x256.png" alt="A pink button that says `` fund a treatment '' on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Wed, 31 Mar 2021 11:04:15 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/international-collaboration-speeds-progress-in-childhood-cancer-research</guid>
      <g-custom:tags type="string" />
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      </media:content>
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      </media:content>
    </item>
    <item>
      <title>Therapeutic Antibody Treatment Options for Relapse/Refractory Neuroblastoma</title>
      <link>https://www.solvingkidscancer.org/blog/therapeutic-antibody-treatment-options-for-relapse-refractory-neuroblastoma</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Neuroblastoma
           &#xD;
      &lt;/strong&gt;&#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            is a pediatric cancer that affects the sympathetic nervous system. It is diagnosed in approximately 800 children in the United States each year, accounting for approximately seven percent of all childhood cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Nearly two-thirds of all children diagnosed with neuroblastoma will have some form of metastatic disease, and infants have a better chance than older children of remaining free of neuroblastoma after treatment. Neuroblastoma is treated according to low, intermediate, and high-risk group assignments.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In some cases, neuroblastoma does not go away after treatment, which can include combinations of surgery, chemotherapy, and radiation. Neuroblastoma that does not go into clinical remission after treatment is called 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           refractory neuroblastoma
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Likewise, some cases of neuroblastoma can return or relapse after achieving clinical remission. These cases are called 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           relapse or recurrent neuroblastoma
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Unfortunately, approximately 50% of children with high-risk neuroblastoma will not survive five years. This reality spurs experts across the globe to test innovative solutions to meet this vast unmet need for children.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           What is an Antibody Treatment?
          &#xD;
    &lt;/strong&gt;&#xD;
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    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           An antibody is a specialized Y-shaped protein that binds to the surface of foreign cells (called antigens) in the body in order to kill harmful cells and mobilize the body’s immune system. Antibody treatments, commonly called 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           immunotherapy
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , enlist the body’s natural immune response to help fight cancer.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           As a treatment option for cancer, antibodies can serve many functions, including:
           &#xD;
      &lt;br/&gt;&#xD;
      
           • Flagging cancerous cells
           &#xD;
      &lt;br/&gt;&#xD;
      
           • Delivering radiation or chemotherapy treatment
           &#xD;
      &lt;br/&gt;&#xD;
      
           • Triggering cell membrane destruction of cancerous cells
           &#xD;
      &lt;br/&gt;&#xD;
      
           • Blocking immune system inhibitors
           &#xD;
      &lt;br/&gt;&#xD;
      
           • Directly attacking cancer cells
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Monoclonal antibodies are molecules produced in a lab that serves as supplemental antibodies to help restore, enhance or mimic the immune system’s attack on cancer cells. They are designed to bind to antigens that are generally more numerous on the surface of cancer cells than healthy cells. When the immune system detects the presence of the antibody on the cancer cells, it triggers responses that kill the cancer cells.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Most neuroblastoma cells express high levels of the substance GD2, which is a Disialoganglioside, or a glycolipid (sugar-fat) present in the surface membrane of cells. GD2 is present on normal nerve fibers, so pain is a significant side-effect of this antibody treatment. Because of the high presence of GD2 on neuroblastoma cells, several antibodies, called anti-GD2, have been developed for neuroblastoma and other GD2-positive cancers.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Anti-GD2 Antibody Treatments
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    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The first anti-GD2 antibodies were developed in the 1980s by groups in the US and Germany. Originally 100% mouse antibodies, these have been modified over time to “chimerize” or “humanize” the antibodies to reduce the anti-mouse antibodies that the body makes to neutralize the desired antibody.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Many clinical trials of anti-GD2 antibodies have been conducted, testing the antibodies as both standalone treatments or in combination with other drugs, such as immune-stimulating cytokines. Anti-GD2 antibodies have been approved for maintenance after reaching the first remission and for relapsed or refractory disease.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Current anti-GD2 antibody treatments available are:
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Dinutuximab (ch14.18):
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            This is a chimeric antibody (meaning, developed combining nonhuman genetic material – in this case, mouse – with that of human genetic material). After several rounds of early phase trials, it was determined that the anti-GD2 activity was limited, so dinutuximab is often given in combination with other treatments to boost efficacy or as a component of maintenance therapy. It was approved for use by the U.S. Food and Drug Administration (FDA) in 2015 and is manufactured by United Therapeutics under the brand name, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           UNITUXIN
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Given with granulocyte-macrophage colony-stimulating factor (GM-CSF) and no longer given with interleukin-2 (IL2), this treatment requires inpatient administration, 8-10 hours a day for four days, one week per month. Toxicities associated with this treatment include neuropathic pain and capillary leak syndrome.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Dinutuximab-beta (ch14.18/CHO):
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            This is a form of ch14.18 recloned using Chinese hamster ovary cells. This antibody was tested with and without subcutaneous IL2 and results showed greater toxicity but no efficacy, so the IL2 has been dropped. It received EMA approval in 2017 and is distributed by EUSA Pharma under the brand name, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           QARZIBA
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Dosing regimens also differ from standard dinutuximab. Dinutuximab-beta uses a longer and slower dosing regimen, with a continuous 10-day infusion, once a month. Like dinutuximab, it is accompanied by neuropathic pain, but more tolerable due to the slow infusion.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Humanized Dinutuximab (hu14.18K322A):
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            This humanized antibody was developed at St. Jude Children’s Research Hospital and is not currently used in any clinical trials. It was designed to decrease toxicity and pain in children with neuroblastoma. This treatment was tested in combination with induction chemotherapy followed by more antibody in maintenance with parent NK cells, and early results indicated that the addition of the antibody significantly improved responses in induction. A follow-on study is being conducted to test dinutuximab in induction. Further studies are warranted to evaluate the efficacy of this treatment.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Immunocytokine (hu14.18-IL2):
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            This antibody was developed in the 1990s as an antibody-cytokine conjugate, and has been tested in early phase trials. A new study for neuroblastoma and osteosarcoma supported by 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/hu14-18-il-2-natural-killer-cells/" target="_blank"&gt;&#xD;
      
           SKC is open at UW-Madison
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            and is being tested in combination with haploidentical NK cells.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Naxitamab (hu3F8):
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Originally called 3F8 or m3F8 (murine), this treatment was humanized and first tested in children in 2011 and is more potent than the murine counterpart. Additionally, naxitamab has shown stronger binding to GD2 than other known anti-GD2 antibodies. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/#videos" target="_blank"&gt;&#xD;
      
           Naxitamab was approved by the FDA
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            in November of 2020 for relapsed or refractory bone and/or marrow disease and is distributed by Y-mAbs under the brand name, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           DANYELZA
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , named for the founder’s daughter who is a neuroblastoma survivor. Given with GM-CSF, the administration is outpatient, 30-90 minutes Monday, Wednesday, and Friday, for one week each month.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Advancing Research Beyond Antibody Treatments
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           While therapeutic antibody treatments have led to remarkable improvements across the neuroblastoma landscape, combinational studies are likely needed to achieve the most effective therapies including bispecific T-cell engaging antibodies and drug antibody conjugates.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer helps accelerate these new, next-generation treatments to ensure children with neuroblastoma have access to the safest and most effective treatments. For example, the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/#videos" target="_blank"&gt;&#xD;
      
           MiNiVan trial
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , funded in part by Solving Kids’ Cancer, introduces a novel combination of treatments — anti-GD2 antibody therapy, MIBG therapy and anti-PD1 therapy. The anti-GD2 therapy attacks the cancerous cells using the GD2 as a target; the MIBG therapy uses radioactive isotopes to identify and deliver treatment to the areas where neuroblastoma cells are detected; and the anti-PD1 therapy stimulates the immune system’s natural response to cancer. This trial is currently in the early phase — determining the safety and tolerability of this therapeutic combination to treat relapse/refractory neuroblastoma.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Understanding the various treatment options available for your child is crucial to providing proactive, comprehensive and supportive care. Solving Kids’ Cancer plays a vital role connecting families dealing with neuroblastoma to the care and resources they need. In November 2020, we hosted our inaugural 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/#intro" target="_blank"&gt;&#xD;
      
           Neuroblastoma Parent Global Symposium
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , where more than 700 parents, medical professionals, charity leaders and industry representatives from 46 countries were able to view live presentations, panel sessions and ask questions about the latest developments in the field.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer knows that bold innovation drives breakthrough treatment options to help cure even the most fatal childhood cancers. Your support funds next-generation treatments like the MiNiVan trial, because the next generation deserves a cure. Give today.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_therapeutic_antibody_treatments_neuroblastoma&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_therapeutic_antibody_treatments_neuroblastoma&amp;amp;utm_medium=blog&amp;amp;utm_content=therapeutic_antibody_treatments_relapse_refractory_neuro" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Fund-768x256.png" alt="A pink button that says `` fund a treatment '' on a white background."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
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           Content References:
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5619016/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5619016/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.accelerate-platform.org/wp-content/uploads/sites/4/2019/03/3.-Nick-Bird.pdf" target="_blank"&gt;&#xD;
      
           https://www.accelerate-platform.org/wp-content/uploads/sites/4/2019/03/3.-Nick-Bird.pdf
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6825564/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6825564/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Fri, 12 Mar 2021 11:07:23 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/therapeutic-antibody-treatment-options-for-relapse-refractory-neuroblastoma</guid>
      <g-custom:tags type="string" />
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        <media:description>thumbnail</media:description>
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    <item>
      <title>How a Child with Cancer Can Qualify for Social Security Benefits</title>
      <link>https://www.solvingkidscancer.org/blog/how-a-child-with-cancer-can-qualify-for-social-security-benefits</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Having a child diagnosed with cancer or a serious illness is a parent’s worst nightmare. The urgency, complexity, and trauma of a child’s cancer diagnosis are all-consuming. In addition, there may be serious concerns about co-pays, deductibles, non-covered services, and out-of-pocket expenses associated with hospital stays.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           There are a number of federal and state resources available to help families with limited income cover extra expenses while their child is sick. If your child qualifies for disability, he or she may be eligible for Supplemental Security Income (SSI) and Medicaid, even if already covered by another insurance. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When determining SSI eligibility for your child, it is important to ask your child’s oncologist if the cancer qualifies as a “disability” according to the Social Security Administration as soon as possible after the diagnosis or relapse has been confirmed. You may also ask to speak to your hospital social worker to help understand SSI benefits for children and eligibility and to learn about other programs available in your state.
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    &lt;/span&gt;&#xD;
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&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
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           How much SSI can a Child Receive?
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Depending on the state program administration and policies, Medicaid may pay for up to three months of past hospital bills that include deductibles, out-of-network excess costs, and co-pays accrued before disability is determined. In some states, children on Medicaid are eligible for reimbursement for travel, parking, accommodation, and meals while away from home for treatment, so families should save all receipts for possible reimbursement if they are approved for aid. Families should also log their mileage for possible reimbursement later. These programs are usually administered by county Health and Human Services departments.
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           How Does a Child Qualify for SSI?
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To qualify for SSI benefits, a child must be sick or expected to be sick for at least 12 months. The approval process can be quite lengthy, so it is important to apply for SSI as soon as possible after a child’s diagnosis, confirmation of relapse, or progressive disease. However, there is an expedited approval process called Compassionate Allowances Conditions for children with a poor-prognosis or late-stage cancer that will help parents start getting benefits quickly. Most rare pediatric cancers qualify for this expedited process, including 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/sarcoma-in-children/" target="_blank"&gt;&#xD;
      
           sarcomas
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/rare-brain-tumors-in-kids/" target="_blank"&gt;&#xD;
      
           brain tumors
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , and 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/neuroblastoma-in-children/" target="_blank"&gt;&#xD;
      
           neuroblastoma
          &#xD;
    &lt;/a&gt;&#xD;
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           . 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           If a type of cancer is not listed under Compassionate Allowances Conditions for automatic rapid review, the child’s cancer will need to meet the requirements that are listed in the Social Security Administration’s Blue Book in order to qualify for SSI benefits. The Blue Book is a listing of physical and mental impairments that the Social Security Administration uses to determine disability. The listings for some types of cancers are very technical, so it’s best to confirm with your child’s oncologist whether he or she meets the criteria in the listing. 
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&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Income Limits and SSI Benefits for Children
          &#xD;
    &lt;/strong&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           When determining how much SSI benefits your child may receive, it’s important to note that SSI benefits for children are designed to lend assistance to families with limited resources. In order to qualify, your household income cannot exceed the income cap set by the Social Security Administration. The 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/ssi/text-child-ussi.htm" target="_blank"&gt;&#xD;
      
           current income limits
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are based on earned versus unearned income and how many adults and children are in the household. These limits may vary by state. 
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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  &lt;h3&gt;&#xD;
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           Applying for SSI Benefits for Children
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To apply for SSI benefits for a child, applicants will need to submit all of the child’s medical records, hospital bills, and doctors’ notes along with their application. Hospital social workers can assist with this process. Applicants will also need to submit their W-2s, most recent tax returns, pay stubs, and any other proof of income. Applicants are not required to consult an attorney to apply for
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&lt;div data-rss-type="text"&gt;&#xD;
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           SSI benefits for children.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Child SSI applications can be submitted 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/benefits/disability/" target="_blank"&gt;&#xD;
      
           online 
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           or in-person at your local Social Security Administration office. (Check with your local office prior to making an appointment to ensure COVID restrictions are lifted). The SSA employees can help you file the claim for benefits and submit all of the documentation for your child’s SSI application. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           At Solving Kids’ Cancer, we believe that a cancer diagnosis should never limit a child’s ability to thrive — regardless of their circumstances. In partnership with the childhood cancer community across the globe, we’re dedicated to providing support and resources for breakthrough treatment options to cure children with the most fatal childhood cancers. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every two minutes, a child is diagnosed with cancer. Together, we can solve that. Learn more about our unique approach to finding, funding, and managing clinical trials.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Get the Latest News
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Stay up to date on all the latest news, including our new research projects, advances in treatment, upcoming events, and more
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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           Sources:
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/ssi/index.htm" target="_blank"&gt;&#xD;
      
           https://www.ssa.gov/ssi/index.htm
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.medicaid.gov/index.html" target="_blank"&gt;&#xD;
      
           http://www.medicaid.gov/index.html
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/compassionateallowances/conditions.htm" target="_blank"&gt;&#xD;
      
           https://www.ssa.gov/compassionateallowances/conditions.htm
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm" target="_blank"&gt;&#xD;
      
           https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/ssi/text-child-ussi.htm" target="_blank"&gt;&#xD;
      
           https://www.ssa.gov/ssi/text-child-ussi.htm
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ssa.gov/benefits/disability/" target="_blank"&gt;&#xD;
      
           https://www.ssa.gov/benefits/disability/
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://secure.ssa.gov/ICON/main.jsp" target="_blank"&gt;&#xD;
      
           https://secure.ssa.gov/ICON/main.jsp
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Disability Benefits Help provides information about disability benefits and the application process.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           To learn more, please visit their website at 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.disability-benefits-help.org/" target="_blank"&gt;&#xD;
      
           http://www.disability-benefits-help.org/
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/applying-for-a-social-security-number-300x229.png" length="197786" type="image/png" />
      <pubDate>Thu, 28 Jan 2021 13:14:00 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/how-a-child-with-cancer-can-qualify-for-social-security-benefits</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/applying-for-a-social-security-number-300x229.png">
        <media:description>thumbnail</media:description>
      </media:content>
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    <item>
      <title>Sarcoma in Children</title>
      <link>https://www.solvingkidscancer.org/blog/sarcoma-in-children</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
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           What is Pediatric Sarcoma?
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           A sarcoma is a cancer that develops in bone or soft tissue. Soft tissue is the connective tissue between body parts and organs and can include muscles, tendons, fat, bone and cartilage, blood vessels, and lymph vessels. Sarcomas can be found anywhere in the body, but they are most often found in the arms, legs, chest, or abdomen. 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Pediatric sarcoma is sarcoma occurring in children, and accounts for approximately 15% of pediatric cancer cases, with 1,500 to 1,700 new cases diagnosed each year. 
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           Types of Sarcoma Cancer in Children
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           There are two main types of sarcoma: soft tissue sarcoma and bone sarcoma. Types of soft tissue sarcoma, often referred to as STS, develops in the soft connective tissue such as the muscles, cartilage, tendons, or fat. Bone sarcoma forms in new tissue in growing bones. Bone and soft-tissue sarcomas are relatively rare childhood cancer tumors. Within the two main types of sarcoma, there are more than 70 subtypes based on the origin and location of cancer. 
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The most commonly diagnosed types include: 
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  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Ewing Sarcoma
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  &lt;p&gt;&#xD;
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           A rare type of childhood sarcoma that grows in bone or the soft tissue surrounding it. It is typically found in the center of the body, such as the chest, pelvis, or vertebrae, but can appear in any bone, including the hands, feet, arms, legs, and skull. It is most often diagnosed during puberty, but can also occur in younger children or adults.
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  &lt;h3&gt;&#xD;
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           Rhabdomyosarcoma
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           This is the most common type of soft tissue sarcoma in children and accounts for nearly 5 percent of childhood cancers. It develops in the skeletal muscles, which are formed from cells called rhabdomyoblasts. Though it can affect anyone, it primarily occurs in children under four years of age. 
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  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Osteosarcoma
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           This type of sarcoma cancer typically originates in the “long bones” of the body, such as the bones of the arms and legs. It is the most common type of bone cancer in children and is usually diagnosed during puberty or times of growth spurts. 
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  &lt;p&gt;&#xD;
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           Other common types of sarcoma in children
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               • Fibrosarcoma – develops in fibrous tissue
           &#xD;
      &lt;br/&gt;&#xD;
      
               • Liposarcoma – develops in fatty tissue
           &#xD;
      &lt;br/&gt;&#xD;
      
               • Synovial sarcoma – develops in cells near the tendons and joints
           &#xD;
      &lt;br/&gt;&#xD;
      
               • Angiosarcoma – develops in the inner lining of the blood vessels
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      &lt;br/&gt;&#xD;
      
               • Chondrosarcoma – develops in the cartilage
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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  &lt;h2&gt;&#xD;
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           Causes, Symptoms, and Risk Factors of Sarcoma in Children
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Unfortunately, medical professionals do not know exactly what causes childhood sarcoma. However, some factors that could increase the risk of developing sarcoma include:
           &#xD;
      &lt;br/&gt;&#xD;
      
              • 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/childhood-cancer-predisposition-syndromes/" target="_blank"&gt;&#xD;
      
           Inherited genetic disorders
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    &lt;span&gt;&#xD;
      
            such as neurofibromatosis and Li-Fraumeni syndrome
           &#xD;
      &lt;br/&gt;&#xD;
      
             • AIDS and Epstein-Barr viral (EBV) infections
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Prenatal genetic changes caused by certain chromosome abnormalities
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Exposure to certain chemicals, such as vinyl chloride
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      &lt;br/&gt;&#xD;
      
             • Previous radiation therapy treatment
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sarcomas often exhibit few symptoms, but symptoms can increase or worsen as the tumor grows and presses on nearby organs or blood vessels. Common sarcoma symptoms in children include:
           &#xD;
      &lt;br/&gt;&#xD;
      
             • A painless lump or mass
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Swelling under the skin
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      &lt;br/&gt;&#xD;
      
             • Pain, tingling, or numbness
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Weakness
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Trouble breathing 
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Classification of Sarcoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sarcoma cancer can be classified into nonmetastatic sarcoma, metastatic sarcoma, and recurrent sarcoma:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Nonmetastatic pediatric sarcoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The cancer has been partly or completely removed in surgery and has not spread to other parts of the body.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Metastatic pediatric sarcoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The cancer has spread from where it started to other parts of the body.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Recurrent sarcoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The cancer has come back (recurred) after it has been treated. It may recur in the original location or in another part of the body.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Diagnosis and Stages of Childhood Sarcoma
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Because symptoms of sarcoma often appear in other childhood conditions, diagnosis of sarcoma in children requires a comprehensive medical examination, which includes a physical exam as well as various types of imaging tests, such as an X-ray, CT scan, MRI, or PET scan. If a mass is found, the diagnosis will be confirmed with the results of a biopsy. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Once diagnosed, doctors will assign a stage to cancer. Staging is a way to classify the severity of cancer by identifying where it is located, if or where it has spread, and whether it is affecting other parts of the body. There are several staging systems for pediatric sarcoma that help to determine the most effective treatment options.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           One tool that doctors use to universally describe stages of sarcoma is the TNM system. Using results from diagnostic tests, doctors assess the below criteria and assign a stage of severity from 1 to 4.
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Tumor (T): Size and location of the mass
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Node (N): Spread to lymph nodes – quantity and location of affected lymph nodes
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Metastasis (M): Spread beyond lymph nodes to other parts of the body – quantity and location of spread
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In addition to the TNM system, doctors use “Grade” (G) to compare cancerous tissue with healthy tissue and examine how much they differ. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Using the T, N, M and G classifications, doctors assign a stage to the cancer. General stages for sarcoma cancer are:
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Stage I: The tumor is small and low grade.
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Stage II: The tumor is small and higher grade.
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Stage III: The tumor is larger and higher grade.
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Stage IV: The cancer has spread to other parts of the body. The original tumor can be any size, any grade, and may or may not have spread to the regional lymph nodes.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Once the sarcoma has been assigned a stage, doctors will coordinate a treatment plan.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Treatment and Prognosis of Sarcoma in Children
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Treatment for pediatric sarcoma depends on the size, grade, location, and spread of the tumor. Treatment often includes a combination of:
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Surgery to remove the tumor and nearby tissue
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Chemotherapy
           &#xD;
      &lt;br/&gt;&#xD;
      
             • Radiation 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Some sarcomas can be completely removed by surgery. More aggressive chemotherapy or radiation is typically reserved for high-grade sarcomas that have larger tumors or have spread to other parts of the body. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Fortunately, children with sarcoma cancer often respond better to treatment than adults and thus have a better prognosis. The prognosis of children with sarcoma is described in terms of the five-year survival rate based on how much a tumor has spread. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Localized Spread:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Limited to the part of the body where it originated; 81% five-year survival rate
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Regional Spread: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Spread to nearby structures or lymph nodes; 57% five-year survival rate
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Distant Spread: 
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Spread to distant parts of the body or other organs such as the lungs; 16% five-year survival rate
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The overall five-year survival rate for pediatric sarcoma is 65%, but this could be lower or higher and is influenced by several factors including tumor size, grade, and location; the age and overall health of the child at the time of diagnosis; and the response to treatment. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Despite significant improvements in outcomes for some pediatric cancers, like acute lymphoblastic leukemia, survival rates in metastatic sarcomas have not improved in 40 years — representing some of the 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/why-research-childhood-cancers-with-low-survival-rates/" target="_blank"&gt;&#xD;
      
           greatest unmet needs in pediatric cancers
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            . 
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Pediatric Sarcoma Research
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Despite modern medical advancements, children with sarcoma have very few promising treatment options — especially in the case of recurrent sarcoma. By investing in innovative, next-generation approaches to therapy and forging 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/international-collaboration-speeds-progress-in-childhood-cancer-research/" target="_blank"&gt;&#xD;
      
           collaborative, international partnerships
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , Solving Kids’ Cancer aims to change the prognosis for children with pediatric sarcoma and rare childhood cancers. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Currently, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/understanding-clinical-trials/" target="_blank"&gt;&#xD;
      
           clinical trials
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            are exploring a combination of approaches, including immunotherapy,1 to counteract the various ways sarcoma cells evade the host immune system. Our project, 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/combining-decitabine-vaccine-therapy/" target="_blank"&gt;&#xD;
      
           Can We Train a Child’s Immune Cells to Recognize and Kill Cancer Cells?
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , used vaccines created from a patient’s immune cells to target and kill cancer cells. We also helped fund a phase I/II study using armed T-cells with GD22 that had at least one signal (immune response) in osteosarcoma pediatric patients. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Pushing the limits of innovation can change the world for children with sarcoma. When you give to Solving Kids’ Cancer, you help change lives by making better treatment options possible — 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           because every kid deserves to grow up®
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
           &#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_sarcoma_children_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_sarcoma_children_1&amp;amp;utm_medium=email&amp;amp;utm_content=updated_sarcoma_in_children_cta" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/CREATE-YOUR-FUNDRAISER-3-768x192.png" alt="A pink button that says `` help solve kids ' cancer ''."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           1 Current State of Immunotherapy and Mechanisms of Immune Evasion in Ewing Sarcoma and Osteosarcoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9818129/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9818129/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           2 Activated T Cells Armed With GD2 Bispecific Antibody in Children and Young Adults With Neuroblastoma and Osteosarcoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://clinicaltrials.gov/ct2/show/NCT02173093" target="_blank"&gt;&#xD;
      
           https://clinicaltrials.gov/ct2/show/NCT02173093
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Sarcoma.png" length="1280310" type="image/png" />
      <pubDate>Wed, 30 Dec 2020 11:13:27 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/sarcoma-in-children</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Sarcoma.png">
        <media:description>thumbnail</media:description>
      </media:content>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Sarcoma.png">
        <media:description>main image</media:description>
      </media:content>
    </item>
    <item>
      <title>Neuroblastoma Cancer Tumor in Children</title>
      <link>https://www.solvingkidscancer.org/blog/neuroblastoma-in-children</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/NB-banner.png" alt="A purple background with the words neuroblastoma in children on it"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           What is Neuroblastoma Cancer?
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neuroblastoma is a type of rare childhood cancer tumor that develops from nerve cells in the fetus called neuroblasts. Typically, these cells mature and develop normally after birth, but occasionally, they can form cancerous tumors, causing neuroblastoma. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neuroblastoma tumors generally develop in the adrenal glands, which are located on top of the kidneys. However, they can also begin in or spread to other parts of the body, including the chest, neck, spine or spinal cord, abdomen, and bones. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neuroblastoma cancer is diagnosed in approximately 800 children in the United States each year. Ninety percent of cases occur in children under five years old, though the average age of diagnosis is between one and two years old. Still, because neuroblastomas form from fetal nerve cells, children as young as newborns can develop these cancer tumors, and neuroblastoma accounts for 50% of all cancer cases in infants.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/NB-blog-pic-768x281.png" alt="A woman is talking on a cell phone while a child is sleeping in a bed."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Neuroblastoma Signs and Symptoms
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neuroblastoma signs and symptoms vary greatly, but the most common symptoms include:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • A hard, painless mass or lump in the neck or abdomen
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Enlarged belly or stomach pain
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Decreased appetite or unexplained weight loss
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Leg weakness or pain
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Wheezing or problems breathing
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Drooping eyelids or small pupils
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Protruding eyeballs or bruising around the eyes
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Diagnosis &amp;amp; Staging of a Neuroblastoma Cancer Tumor 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Diagnosing neuroblastoma cancer in children relies on a variety of factors, including a physical examination; imaging tests such as X-rays, ultrasounds, computerized tomography (CT) scans, magnetic resonance imaging (MRI), and metaiodobenzylguanidine (MIBG) scans; urine tests; blood tests; and removing tissue or bone marrow for sampling.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           A critical piece of the diagnostic process is staging, which determines tumor malignancy, the extent of the disease, and if it has spread to other parts of the body. There are currently two systems for determining neuroblastoma staging. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The International Neuroblastoma Staging System (INSS) determines stages based on the amount of the tumor able to be removed surgically. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stage 1:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            The tumor can be completely removed by surgery and has not spread to lymph nodes. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stage 2a:  
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The tumor has not spread but cannot be completely removed by surgery. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stage 2b:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            The tumor has not spread but cannot be removed by surgery. Nearby lymph nodes contain some neuroblastoma cells. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stage 3
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           : The tumor has spread to regional lymph nodes or crossed to the other side of the body.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stage 4:  
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The tumor has spread to distant lymph nodes, bones, bone marrow, liver, skin and/or other organs.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Stage 4S:  
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The tumor is located only where it started (as in stage 1, 2a or 2b), and it has spread only to the skin, liver and/or bone marrow, in infants younger than one.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Because surgery is not always a treatment option, the International Neuroblastoma Risk Group Staging System (INRGSS) uses imaging tests such as CT scans, MRIs or MIBG scans to determine the stage of the disease and decide on neuroblastoma treatments. Stages are classified into four categories: 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           L1:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            The tumor has not spread.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           L2:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            The tumor has slightly spread but has at least one image-defined risk factor (IDRF), an imaging feature seen at the time of neuroblastoma diagnosis that indicates a poorer neuroblastoma prognosis.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           M:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            The tumor has spread to a distant area of the body.
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           MS:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;strong&gt;&#xD;
      
            The tumor has spread only to the skin, liver and/or bone marrow in a child who is younger than 18 months. 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Brain-tumor-blog-header.jpg" alt="A scientist is holding a pipette and a beaker in a laboratory."/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Neuroblastoma Treatments and Prognosis
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h2&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Neuroblastoma treatments for children vary based on age, stage, the type of cells involved in the cancer and whether there are additional copies of the MYCN gene present. The MYCN gene regulates cell growth. When mutated, it can cause cancerous tumors. Cancer tumors with the MYCN gene, like neuroblastoma, are more likely to spread and less likely to respond to treatment. Based on these factors, children are placed into different risk categories:
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    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Low Risk: Stage 1; Stage 2a and 2b in which more than 50% of the tumor was surgically removed and no additional copies of the MYCN gene
           &#xD;
      &lt;/span&gt;&#xD;
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    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            Intermediate Risk:  Stages 2a and 2b in which less than 50% of the tumor was removed and no additional copies of the MYCN gene; Stage 3 with no additional copies of the MYCN gene; Stage 4 and under 1 year of age with no additional copies of the MYCN gene; Stage 4S with no additional copies of the MYCN gene
           &#xD;
      &lt;/span&gt;&#xD;
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    &lt;li&gt;&#xD;
      &lt;span&gt;&#xD;
        
            High Risk: Stages 2a, 2b and 3 with extra copies of the MYCN gene; Stage 4 and 4S with extra copies of the MYCN gene
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  &lt;/ul&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Treatment plans are determined by risk category and typically consist of a combination of surgery to remove as much of the tumor as possible, chemotherapy and radiation therapy. Stage 4 neuroblastoma and higher risk patients often receive additional treatments, such as immunotherapy, bone marrow transplants, or newer treatments like MIBG therapy, which uses radioactive MIBG to target neuroblastoma cells and release radiation.1
          &#xD;
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    &lt;span&gt;&#xD;
      
           Risk categories also determine the five-year survival rates for children with neuroblastoma. 
          &#xD;
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    &lt;span&gt;&#xD;
      
           For low-risk patients: about 95%
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For intermediate-risk patients: 80-90%
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           For high-risk patients: 40-50%
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Approximately two-thirds of all children diagnosed with neuroblastoma cancer will have some metastatic disease, and infants have a better chance than older children of remaining free of neuroblastoma after treatment.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer, alongside Children’s Neuroblastoma Cancer Foundation and Solving Kids’ Cancer UK, recently held the inaugural 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/symposium/" target="_blank"&gt;&#xD;
      
           Neuroblastoma Parent Global Symposium
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . This virtual event brought together families affected by neuroblastoma from around the world with those who work to treat, help and support them. During the event, international experts shared information on treatment and clinical trials for neuroblastoma treatments through live presentations, panel sessions and Q&amp;amp;As.
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    &lt;/span&gt;&#xD;
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    &lt;br/&gt;&#xD;
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  &lt;h2&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Solving Kids’ Cancer’s Role in Neuroblastoma Research
          &#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Despite multi-modal treatment with chemotherapy, surgery and radiation, children with high-risk neuroblastoma have a more difficult prognosis. A recent combination of chemotherapy and anti-GD2 treatment has shown promise for some children with neuroblastoma who have relapsed or refractory disease.2
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In our research approach, Solving Kids’ Cancer is championing 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/role-impact/our-projects/neuroblastoma-all/" target="_blank"&gt;&#xD;
      
           clinical studies
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            using novel combinations of new modalities like 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/improving-treatments-for-neuroblastoma/" target="_blank"&gt;&#xD;
      
           immunotherapy and targeted therapies
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            against validated biomarkers along with developing better drug delivery and identifying new targets for immunotherapy and targeted agents. Building on this, Solving Kids’ Cancer is working in tandem with the research community to move these promising new modalities much earlier in the course of treatment for newly diagnosed children.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           These collective efforts hold great promise for improved outcomes and are enabled by our ability to remain independent from single institutions and work with collaborators internationally.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer is currently supporting seven neuroblastoma clinical trial and development projects, in addition to the 17 previously supported. A recent achievement was 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/targeted-therapy-for-children-with-alk-driven-neuroblastoma/" target="_blank"&gt;&#xD;
      
           spearheading an international effort
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            to bring Lorlatinib, an investigational drug candidate in development for lung cancer, to a transatlantic new clinical trial for kids with neuroblastoma. While the trial has not yet concluded, the early results for 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/meetkira/" target="_blank"&gt;&#xD;
      
           Kira
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           , a teenager in Scotland, are very promising.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
            
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Solving Kids’ Cancer believes the launch and support of just one clinical trial can save lives and change the world for children with cancer. 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_neuroblastoma_children_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_neuroblastoma_children_1&amp;amp;utm_medium=blog&amp;amp;utm_content=neuroblastoma_children_cta_1" target="_blank"&gt;&#xD;
      
           Your gift
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            makes innovative clinical trials for kids like Kira who are fighting neuroblastoma possible — because every kid deserves to grow up®.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_neuroblastoma_children_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_neuroblastoma_children_2&amp;amp;utm_medium=blog&amp;amp;utm_content=neuroblastoma_children_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate-Now.png" alt="A pink button with the words `` donate now '' on it."/&gt;&#xD;
  &lt;/a&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h6&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Sources
           &#xD;
      &lt;br/&gt;&#xD;
      
           1 Neuroblastoma – 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8785544/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8785544/
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_neuroblastoma_children_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_neuroblastoma_children_2&amp;amp;utm_medium=blog&amp;amp;utm_content=neuroblastoma_children_cta_2" target="_blank"&gt;&#xD;
      
           2 Immunotherapy of Neuroblastoma: Facts and Hopes – 
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9344822/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9344822/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/h6&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Fri, 11 Dec 2020 12:01:48 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/neuroblastoma-in-children</guid>
      <g-custom:tags type="string" />
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Nb+cancer+in+children.png">
        <media:description>thumbnail</media:description>
      </media:content>
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    <item>
      <title>Landmark Transatlantic Trial for Children with High-Risk Neuroblastoma Funded by Parent-Led Charities</title>
      <link>https://www.solvingkidscancer.org/blog/landmark-transatlantic-trial-for-children-with-high-risk-neuroblastoma-funded-by-parent-led-charities</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/126058987_3651055854916282_5692671459548156925_o.jpg" alt="A map of the world with the word titan on it"/&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           FOR IMMEDIATE RELEASE  New York, NY  Sept. 2020 – In a landmark in pediatric oncology research, children with high-risk neuroblastoma across Europe and North America will be treated together for the first time, following the award of $1.4M to fund a new transatlantic clinical trial led by Dr. Yael Mossé of Children’s Hospital of Philadelphia and Dr. Dominique Valteau-Couanet of Gustave Roussy in Paris, investigating the ALK inhibitor lorlatinib in the treatment of children with newly diagnosed high-risk neuroblastoma, a deadly childhood cancer that mainly affects children under the age of five.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The study, known as TITAN – Transatlantic Integration Targeting ALK in Neuroblastoma – will see a targeted drug introduced to frontline treatment for children, with the hope of dramatically increasing survival rates. This landmark collaboration between the Children’s Oncology Group (COG) in North America and the SIOPEN research network in Europe represents the first time these pediatric consortia on both sides of the Atlantic have worked together to design and run a clinical trial.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           It is also the first International Neuroblastoma Research Initiative award to be funded under Solving Kids’ Cancer UK’s AMRC-accredited research funding call and follows an extensive and stringent scientific review process.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            The challenge grant award was driven by collaborative funding from seven parent-led neuroblastoma research charities;
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.bandofparents.org/" target="_blank"&gt;&#xD;
      
           Band of Parents
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ,
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://j-a-c-k.org/" target="_blank"&gt;&#xD;
      
           Joining Against Cancer in Kids (J-A-C-K)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ,
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://ronanfoundation.org/" target="_blank"&gt;&#xD;
      
           Ronan Thompson Foundation
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ,
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.solvingkidscancer.org.uk/" target="_blank"&gt;&#xD;
      
           Solving Kids’ Cancer UK
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ,
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="/"&gt;&#xD;
      
           Solving Kids’ Cancer (US)
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ,
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.wadesarmy.org/" target="_blank"&gt;&#xD;
      
           Wade’s Army
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            and
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://zoe4life.org/en/" target="_blank"&gt;&#xD;
      
           Zoé4life
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Scott Kennedy, Executive Director of SKC, said: “We couldn’t be more hopeful. This trial embodies the two most important goals of SKC’s approach – advancing promising new therapies to children, earlier, when they are newly diagnosed and transatlantic collaboration so that the highest number of children can access the trial. We’re thrilled that the largest cooperative trial groups In North America and Europe are collaborating to make this a reality for children and their families.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The new study will be integrated to form part of the ongoing COG and SIOPEN Phase 3 high-risk neuroblastoma trials, and will involve children at Children’s Oncology Group hospitals in North America and SIOPEN institutions across Europe and the UK having their tumors tested for mutations in the ALK gene when they are first diagnosed. Such mutations are found in around 14% of patients and represent a group of children who have inferior survival with current multi-modal treatment regimens. Children whose tumors are found to have ALK mutations will soon be treated with the addition of lorlatinib, a third-generation ALK inhibitor manufactured and supplied by the pharmaceutical company Pfizer. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           “This is a landmark step in clinical research for children with neuroblastoma,” said Prof Andy Pearson, MD, Chair of the Solving Kids’ Cancer UK Scientific Advisory Board. “With pediatric cancer hugely underfunded in comparison to adult cancer, there is an urgent need for breakthrough treatments for the most difficult-to-cure childhood cancers like neuroblastoma. This trial has the potential to accelerate the discovery of a new treatment and lay the foundation for future collaborations of this nature.”
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;ul&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Principal investigators:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             Dr. Yael Mossé of Children’s Hospital of Philadelphia and Dr. Dominique Valteau-Couanet of Gustave Roussy in Paris.
             &#xD;
          &lt;br/&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
    &lt;li&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Project partners:
           &#xD;
      &lt;/strong&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://www.bandofparents.org/" target="_blank"&gt;&#xD;
        
            Band of Parents
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ,
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://j-a-c-k.org/" target="_blank"&gt;&#xD;
        
            Joining Against Cancer in Kids (J-A-C-K)
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ,
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://ronanfoundation.org/" target="_blank"&gt;&#xD;
        
            Ronan Thompson Foundation
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ,
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://www.solvingkidscancer.org.uk/" target="_blank"&gt;&#xD;
        
            Solving Kids’ Cancer UK
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ,
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="/"&gt;&#xD;
        
            Solving Kids’ Cancer (US)
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             ,
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://www.wadesarmy.org/" target="_blank"&gt;&#xD;
        
            Wade’s Army
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        &lt;span&gt;&#xD;
          
             and
            &#xD;
        &lt;/span&gt;&#xD;
      &lt;/span&gt;&#xD;
      &lt;a href="https://zoe4life.org/en/" target="_blank"&gt;&#xD;
        
            Zoé4life
           &#xD;
      &lt;/a&gt;&#xD;
      &lt;span&gt;&#xD;
        
            .
           &#xD;
      &lt;/span&gt;&#xD;
    &lt;/li&gt;&#xD;
  &lt;/ul&gt;&#xD;
&lt;/div&gt;</content:encoded>
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      <pubDate>Thu, 12 Nov 2020 15:10:24 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/landmark-transatlantic-trial-for-children-with-high-risk-neuroblastoma-funded-by-parent-led-charities</guid>
      <g-custom:tags type="string">Press Releases</g-custom:tags>
      <media:content medium="image" url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/126058987_3651055854916282_5692671459548156925_o.jpg">
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    </item>
    <item>
      <title>Why Research Childhood Cancers with Low Survival Rates?</title>
      <link>https://www.solvingkidscancer.org/blog/why-research-childhood-cancers-with-low-survival-rates</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Researching Childhood Cancers with Low Survival Rates
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The Rare Diseases Act of 2002 states that a disease or disorder is considered “rare” if fewer than 200,000 people are affected by it in the United States. Of more than 100 types of cancer[1], only breast and prostate cancers do not qualify as a “rare disease.” Childhood cancers are all “rare diseases” as they make up only 1% of all cancers diagnosed annually. There are 16 major types of cancer that affect children, with a host of subtypes, with some types affecting just dozens or less of children per year in the U.S. This makes any childhood cancer truly ultra-rare, which presents distinct challenges for research and clinical trials to improve survival. Despite this rarity, cancer is the most common cause of disease-related death in children in developed countries.
           &#xD;
      &lt;br/&gt;&#xD;
      
           While there have been dramatic improvements in outcomes for some pediatric cancers[2] such as leukemia (ALL), there are some tumor types that have had no improvement in survival in decades[3], such as metastatic sarcomas and some brain tumors. Chronic and severe late effects from toxic treatments plague the survivors of cancers such as neuroblastoma, and there is a growing and urgent need to improve therapies with less toxic and novel approaches.
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      &lt;span&gt;&#xD;
        
            ﻿
           &#xD;
      &lt;/span&gt;&#xD;
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  &lt;h3&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The Challenges of Researching Rare Childhood Cancers
          &#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           ● 
          &#xD;
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           Small Numbers to Accrue on Clinical Trials
          &#xD;
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    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           Rare childhood cancers are extremely challenging to study in clinical trials because there are so few patients with the same diagnosis. Some tumor types such as ETMR and ATRT are so rare there are no standard protocols developed. Other types such as neuroblastoma or medulloblastoma have seen very slow progress because large randomized trials can take a decade to complete.
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           For example, it took 25 years for clinical trials to be completed to prove that an antibody given after intense chemotherapy, surgery, and radiation improves outcomes for children with neuroblastoma. Consequently, most protocols still use the same chemotherapy agents introduced 40 years ago.
          &#xD;
    &lt;/span&gt;&#xD;
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           ● Ethics of Research on Children[4] [5]
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           Children are considered a vulnerable population in medical research because of the limited understanding of the nature of the research and the risk/benefit ratio, which creates unique ethical concerns. In addition, children may be affected by medicines differently than adults due to normal growth and development processes. Children cannot therefore give informed consent to participate in a clinical trial, so policies that govern parental consent are included in the ethical review of clinical trials.[6]
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           ● Need for More Funding and Incentives
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           With an estimated 7,000 rare diseases[7] described, government funding for the study of each disease is highly competitive. From 1973-1983, less than 10 treatments for rare diseases were approved. Through programs and legislation that incentivize biotechs and pharmaceutical companies to develop treatments for rare diseases, the FDA aims to improve the process of bringing treatments to the market. For example, the Creating Hope Act (2012) established the priority review voucher program, which provides incentives to companies who develop FDA-approved drugs for rare pediatric diseases such as cancer. In addition, the RACE Act[8] (2017) mandated that adult oncology drugs also be tested in children when the molecular targets are relevant to children’s cancers. Both acts radically changed the landscape of drug development for pediatric cancers — stimulating both investment and early regulatory discussions for pediatric testing plans.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Because of the new regulatory landscape, companies are more willing than ever to test their products in children with cancer. However, this requires significant funding to accomplish, especially for biotech startups with novel agents but limited capital to fund pediatric studies. This results in increased demand for philanthropic funding from charities to support critical new trials.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ● Lack of Research Cooperation
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;br/&gt;&#xD;
      
           Today’s research environment also contributes to the difficulty of advancing research for cancers with low survival rates. Limited availability of funds encourages competition rather than collaboration, resulting in frequently uncoordinated efforts. Some agents are advanced even when little or no benefit is demonstrated. Pre-clinical data is often not translated into clinical trials, resulting in missed opportunities to utilize novel agents, approaches, and targets. The lack of a collaborative and coordinated approach across research teams limits the impact on improved survival. One important effort to improve international collaborations is through the multi-stakeholder ACCELERATE platform[9] where Solving Kids’ Cancer serves on working groups with industry, academics, regulatory experts, and leading advocates.
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&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           The Benefits of Researching Rare Diseases
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Despite the challenges presented by researching rare diseases such as childhood cancers, there are a variety of reasons to invest in this type of research – even for the rarest childhood cancers.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           ● 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Scientific Breakthroughs and Discoveries:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Investigating the underlying cause of rare diseases can lead to major breakthroughs, such as discovering gene mutations or new disease processes. Scientific breakthroughs can also lead to more publicity and increased awareness about the disease, which often results in more research funding.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ● Research is Applicable to Other Disease Spaces:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Research or drug development for rare childhood cancers could lead to the development of more effective therapeutics for other diseases that have similar disease processes or underlying causes.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           ● Every Kid Deserves to Grow Up®:
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    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            Kids have a longer life ahead of them with more time and opportunity to contribute to society.[10] Despite their young age at diagnosis, children with rare childhood cancers should be entitled to the same quality of treatment as other patients.
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    &lt;/span&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Funding Effective Treatments and Breakthroughs for Childhood Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           In recent years, nonprofit and medical organizations, researchers, and oncologists have recognized the urgent need to invest in researching childhood cancers with low survival rates. Growing collaboration across the field has created several opportunities to improve the outcomes for children.
          &#xD;
    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      &lt;span&gt;&#xD;
        
            ﻿
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  &lt;p&gt;&#xD;
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           For example, several disease-specific registries have been created, aggregating resources among the research community and allowing researchers to gather biological samples from tumors for use in further studies.
          &#xD;
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    &lt;br/&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Another approach is bringing together the top experts in a particular tumor type to discuss challenges and brainstorm solutions. Solving Kids’ Cancer facilitated satellite and dedicated meetings for medulloblastoma over a three-year period, culminating with a summit in New York in December 2019. This workshop, attended by invited researchers, clinicians, and charity leaders, resulted in three new clinical trial concepts, the first of which is now funded by a collaboration of charities and will test a bold new immunotherapy approach in children with relapsed or refractory medulloblastoma. Solving Kids’ Cancer continues to address unmet needs with plans to bring together key stakeholders from around the world to stimulate bold approaches in other poor-prognosis tumor types.
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    &lt;/span&gt;&#xD;
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&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/thisisengineering-raeng-mF6gB6hV5OU-unsplash-1-768x512.jpg" alt="A group of scientists are working in a laboratory."/&gt;&#xD;
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&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           By encouraging global collaboration and challenging researchers to think boldly, Solving Kids’ Cancer has helped the field to focus on investigating new treatments and strategies to improve survival rates for rare childhood cancers, such as neuroblastoma and sarcomas, in addition to 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/blog/rare-brain-tumors-in-kids/" target="_blank"&gt;&#xD;
      
           rare brain tumors in kids
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           . Since 2008, Solving Kids’ Cancer has invested in 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://solvingkidscancer.org/role-impact/our-projects/projects-all/" target="_blank"&gt;&#xD;
      
           41 translational and clinical research projects
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
            that include 28 clinical trials testing novel agents and combinations in children. These clinical trials have introduced new antibodies, vaccines, oncolytic viruses, novel delivery, and targeted agents to children in more than 30 countries, and many are showing promise in terms of efficacy and less toxicity.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Every two minutes, a child is diagnosed with cancer. Together, we can solve that. Learn more about our unique approach to finding, funding, and managing clinical trials.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;h3&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Get the Latest News
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/h3&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Stay up to date on all the latest news, including our new research projects, advances in treatment, upcoming events and more.
          &#xD;
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&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
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           Sources:
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [1] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.cancer.gov/about-cancer/understanding/what-is-cancer#:~:text=There%20are%20more%20than%20100,in%20cells%20of%20the%20brain." target="_blank"&gt;&#xD;
      
           https://www.cancer.gov/about-cancer/understanding/what-is-cancer#:~:text=There%20are%20more%20than%20100,in%20cells%20of%20the%20brain.
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [2] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702720/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702720/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [3] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4086810/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4086810/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [4] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2606083/" target="_blank"&gt;&#xD;
      
           https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2606083/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [5] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://ec.europa.eu/health//sites/health/files/files/paediatrics/docs/paeds_ethics_consultation20060929_en.pdf" target="_blank"&gt;&#xD;
      
           https://ec.europa.eu/health//sites/health/files/files/paediatrics/docs/paeds_ethics_consultation20060929_en.pdf
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [6] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://journalofethics.ama-assn.org/article/parental-consent-pediatric-research/2006-10" target="_blank"&gt;&#xD;
      
           https://journalofethics.ama-assn.org/article/parental-consent-pediatric-research/2006-10
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [7] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases#:~:text=In%20the%20United%20States%2C%20a,adopting%20them%20to%20develop%20treatments." target="_blank"&gt;&#xD;
      
           https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases#:~:text=In%20the%20United%20States%2C%20a,adopting%20them%20to%20develop%20treatments.
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [8] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.covance.com/content/dam/covance/assetLibrary/whitepapers/RACE-for-Children-Act-WPCDS036.pdf" target="_blank"&gt;&#xD;
      
           https://www.covance.com/content/dam/covance/assetLibrary/whitepapers/RACE-for-Children-Act-WPCDS036.pdf
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [9] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.accelerate-platform.org/" target="_blank"&gt;&#xD;
      
           https://www.accelerate-platform.org/
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           [10] 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://curesearch.org/Average-Years-Of-Life-Lost-To-Cancer/#:~:text=The%20average%20age%20of%20death,life%20lost%20than%20other%20cancers" target="_blank"&gt;&#xD;
      
           https://curesearch.org/Average-Years-Of-Life-Lost-To-Cancer/#:~:text=The%20average%20age%20of%20death,life%20lost%20than%20other%20cancers
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
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  &lt;/p&gt;&#xD;
&lt;/div&gt;</content:encoded>
      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/laboratory-2815641_1920-300x200.jpg" length="12549" type="image/jpeg" />
      <pubDate>Wed, 11 Nov 2020 05:28:34 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/why-research-childhood-cancers-with-low-survival-rates</guid>
      <g-custom:tags type="string" />
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        <media:description>main image</media:description>
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    </item>
    <item>
      <title>Rare Brain Tumors in Kids</title>
      <link>https://www.solvingkidscancer.org/blog/rare-brain-tumors-in-kids</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Brain-tumor-blog-header.png" alt="A blurred image of a person in a lab coat with the words rare brain tumors in kids."/&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Brain and spinal cord tumors, also known as central nervous system (CNS) tumors, are the most common type of solid tumors affecting children. Brain tumors make up about 25% of pediatric cancers, and are the second most commonly diagnosed cancer in children and now, the deadliest type of childhood cancer, ahead of leukemia.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           The cause of primary brain tumors is unknown, although some tumors have germ line mutations and tend to be hereditary. The majority result from somatic mutations and are not hereditary.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Brain and spinal cord tumors are masses of abnormal cells that have grown out of control. Tumors can form in almost any type of tissue in the brain and spinal cord, and are typically classified based upon the tumor’s cell structure, composition, rate of growth, location and grade (a number that indicates how abnormal the cancer cells are and how fast they are likely to grow and spread).
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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           Symptoms of a brain tumor develop when abnormal tissue expands and puts pressure on healthy brain tissue or the tumor interferes with the normal flow of fluid around the brain and spinal cord.
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           Symptoms of Brain Tumors in Children 
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           Symptoms of brain tumors in children vary depending on the size, location, type and grade of the tumor. Children with a brain tumor may experience: 
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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           • Seizures
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           • Nausea and vomiting
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           • Problems with walking or balance
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           • Changes in personality
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           • Aggression and irritability
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           • Weakness or lack of energy 
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           • Learning difficulties
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           • Memory loss
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           • Problems with hearing, vision and other senses
          &#xD;
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           • Pain, especially back pain
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
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           • Headaches, especially early in the morning or in the middle of the night
          &#xD;
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  &lt;p&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Types of Rare Brain Tumors 
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           While there are many different types of brain tumors that affect children, rare tumors are often the most difficult to treat, in part because so little research has been done on them, and in part because they are typically more fast-growing and aggressive. Rare brain tumors have recently become much better classified as distinct entities with their own unique biological characteristics. 
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Some rare types of brain tumors in children are:
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  &lt;/p&gt;&#xD;
&lt;/div&gt;&#xD;
&lt;div data-rss-type="text"&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Atypical Teratoid Rhabdoid Tumor (ATRT)
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            – a fast-growing tumor that typically begins in the cerebellum, or brainstem. ATRTs are very rare. They are found in fewer than 3% of children with brain tumors and are most often seen in children three years of age or younger.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Embryonal Tumors with Multilayered Rosettes (ETMR)
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
            – aggressive, small round blue cell tumors that mostly occur in children two years of age or younger.
          &#xD;
    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           Diffuse Intrinsic Pontine Glioma (DIPG)
          &#xD;
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            – a tumor located in the pons (middle) of the brain stem. They are more common in children between the ages of five and 10 years, and account for about 10% to 20% of childhood brain tumors. 
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           Because of their varying locations, characteristics and severity, treating brain tumors in children, especially rare ones, can be incredibly challenging.
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           Treatment for Brain Tumors in Children  
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           Brain tumors in children are typically treated with a combination of radiation, chemotherapy and surgery. However, the brain is a crucial and highly sensitive organ, and different parts of the brain affect different functions of the body, such as vision, speech and movement. 
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           Typically, the best course of action is to remove the brain tumor with surgery, but surgery is not always an option (such as in DIPG). Depending on the location of the tumor and how widespread it is, it may not be possible to remove the tumor without damaging other parts of the brain. 
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           It’s often difficult for other treatments, such as chemotherapy, to reach the tumor as well. The brain is surrounded by a protective layer of cells (called the blood-brain-barrier), which prevents toxins, pathogens and most drugs from reaching the brain. 
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           Prognosis for Rare Brain Tumors in Children
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           Like the treatment plan, the prognosis for children with brain tumors depends on the type of tumor, its grade, its size and its location. Brain tumors may be low grade (less aggressive) or high grade (very aggressive). 
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           Unfortunately, because research isn’t prioritized for rare, pediatric brain tumors, the survival rates remain unsatisfactorily low, below 50 percent. Even in the case of survival, children are often left with lifelong effects from the tumor and its treatment, including learning difficulties, growth problems, paralysis, and more.
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           Pediatric Brain Tumor Research 
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           Despite significant improvements in outcomes for some pediatric cancers, when current treatment options such as chemotherapy, surgery, and radiotherapy fail for childhood brain tumors, there is an unacceptably low chance of survival. The system currently serving these children is ineffective, in part because the latest and most innovative research is prioritized for adults.
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           Through projects like 
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    &lt;a href="https://solvingkidscancer.org/blog/nivolumab-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           Can Nivolumab Treat Childhood Brain Tumors?
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            and 
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    &lt;a href="https://solvingkidscancer.org/blog/first-in-class-immunotherapy-for-relapsed-and-refractory-pediatric-brain-tumors/" target="_blank"&gt;&#xD;
      
           Immunotherapy for Relapsed and Refractory Pediatric Brain Tumors
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           , Solving Kids Cancer is pushing the boundaries of what is possible to bring the maximum benefit to children. With a focus on experimental and innovative treatments, such as immunotherapy, Solving Kids’ Cancer has funded 28 clinical trials for childhood cancer research and has six additional projects currently ongoing.
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           Though clinical trials in rare brain tumors still lag behind more common brain tumors, Solving Kids’ Cancer is helping the field to focus on investigating new treatments and strategies towards the goal of improving survival.
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           From October 24-31, International Brain Tumor Awareness Week brings attention to the challenges posed by brain tumors and the need for increased research. 
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    &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_rare_brain_tumors_1&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_rare_brain_tumors_1&amp;amp;utm_medium=blog&amp;amp;utm_content=rare_brain_tumors_children_cta_1" target="_blank"&gt;&#xD;
      &lt;strong&gt;&#xD;
        
            Your donation to Solving Kids’ Cancer
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            plays a vital role in helping to identify current unmet research needs and advance breakthrough research to match those needs quickly because every kid deserves to grow up®.
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&lt;div&gt;&#xD;
  &lt;a href="https://solvingkidscancer.rallybound.org/donate2skc/Donate?rbref=blog_rare_brain_tumors_2&amp;amp;utm_campaign=gen&amp;amp;utm_source=blog_rare_brain_tumors_2&amp;amp;utm_medium=blog&amp;amp;utm_content=rare_brain_tumors_children_cta_2" target="_blank"&gt;&#xD;
    &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Donate-Now.png" alt="A pink button with the words `` donate now '' on it."/&gt;&#xD;
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      <pubDate>Mon, 19 Oct 2020 11:09:54 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/rare-brain-tumors-in-kids</guid>
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      <title>2020 Lace Up For Kids!</title>
      <link>https://www.solvingkidscancer.org/2020laceupforkids</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/1.png" alt="A couple of people standing next to each other with the words lace up for kids above them"/&gt;&#xD;
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           September is Childhood Cancer Awareness Month.
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           It’s time to swap your white laces for some glittery gold shoelaces as you raise awareness and fundraise for childhood cancer research through
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    &lt;a href="https://indd.adobe.com/view/125f2b91-37da-4359-a2c1-0f37f4adc12a" target="_blank"&gt;&#xD;
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            Solving Kids’ Cancer’s Lace Up For Kids program
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           !
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           More than 82,000 pairs of gold shoelaces have found their way to all 50 U.S. states and around the world since Lace Up for Kids was launched in 2017! Through the power of social media, gold shoelaces landed in 20 countries including Australia, the Philippines, France, Canada, Austria, Senegal, Poland, and more.
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           Entire schools, notable influencers, sports leagues, and even pets have been spotted sporting their gold laces.
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           “Lace Up for Kids” became the celebrated theme of this little cat’s birthday party! 
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           Two moms from the greater Portland area of Oregon, Alicia Mattox and Tiffany Blok, wanted to show their support for kids and families affected by childhood cancer. They are Fit4Mom instructors who selected Lace Up For Kids to raise both awareness and critical funds for new research. 
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            ﻿
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           “One of our own Fit4Mom instructors recently had a nephew diagnosed with cancer, so we know that so many families are dealing with really difficult situations. We knew that September was Childhood Cancer Awareness Month and because of the pandemic, we were only holding virtual classes but really wanted to find something fun and engaging for our moms to rally around while doing something meaningful to give back. Lace Up for Kids was kind of a perfect fit. And the gold laces are such a great visual representation of your efforts to support the cause and to raise money for advances in research that lead to new treatments.”
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           -Tiffany Blok, Fit4Mom Instructor
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&lt;div data-rss-type="text"&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           How will you get involved in Lace Up for Kids? Here are some ideas!
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           • 
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    &lt;a href="https://solvingkidscancer.rallybound.org/lace-up-for-kids-2021/Account/Register" target="_blank"&gt;&#xD;
      
           Register
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    &lt;span&gt;&#xD;
      
            as a team captain and ask for friends and family to join you!
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    &lt;/span&gt;&#xD;
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  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Swap your white laces for gold shoelaces, take pictures of notable places you travel in those gold laces, post to social media, and ask for friends and family to support childhood cancer research this September.
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           • Make it a team experience! Softball league? Basketball team? Football team? 
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    &lt;a href="https://secure.solvingkidscancer.org/np/clients/solvingkidscancer/survey.jsp?forwardedFromSecureDomain=1&amp;amp;surveyId=15" target="_blank"&gt;&#xD;
      
           Order our gold laces in bulk
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            and get the whole team wearing gold laces, then ask spectators for donations for childhood cancer research.
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  &lt;p&gt;&#xD;
    &lt;a href="https://solvingkidscancer.rallybound.org/lace-up-for-kids-2021" target="_blank"&gt;&#xD;
      
           Sign up today
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    &lt;span&gt;&#xD;
      
            and make a 
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    &lt;strong&gt;&#xD;
      
           GOLD
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    &lt;span&gt;&#xD;
      
            statement during Childhood Cancer Awareness Month. Every year, more than 400,000 children are diagnosed with cancer, and advances in care and treatment have not, in many cases, changed in decades. Let’s change the future for kids with cancer and their families.
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      <pubDate>Sun, 09 Aug 2020 00:19:47 GMT</pubDate>
      <author>kristi@solvingkidscancer.org (Kristi McKay)</author>
      <guid>https://www.solvingkidscancer.org/2020laceupforkids</guid>
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    <item>
      <title>Clinical Trial Harnesses Power of Natural Killer Cells to Treat Neuroblastoma</title>
      <link>https://www.solvingkidscancer.org/clinical-trial-harnesses-power-of-natural-killer-cells</link>
      <description />
      <content:encoded>&lt;div data-rss-type="text"&gt;&#xD;
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           Clinical Trial Harnesses Power of Natural Killer Cells to Treat Neuroblastoma
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           November 13, 2018
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           New York City— Researchers have made rapid advances in understanding how to manipulate the immune system safely to destroy cancer cells. Adoptive transfer of haploidentical natural killer (NK) cells has shown promise as a treatment option to target and kill cancer cells in a less toxic way than conventional therapies. Now for the first time, scientists will combine NK cell therapy with an immunocytokine to target children with relapsed/refractory neuroblastoma including those with bulky tumors.
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           Solving Kids’ Cancer, The Catherine Elizabeth Blair Memorial Foundation, and Wade’s Army awarded a $136,000 grant to support the novel immunotherapy clinical trial for childhood cancer. Researchers will use a humanized monoclonal antibody linked to IL2, known as hu14.18-IL2, which specifically targets neuroblastoma tumor cells and binds to them, while the IL2 activates NK cells. It is expected that the humanized monoclonal antibody may be more effective at activating the NK cells for killing the cancer cells. Using a novel technique, scientists will collect, expand, and infuse donor NK cells—originating from a parent—into children with neuroblastoma.
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           The phase I clinical trial is now open and currently recruiting children at the American Family Children’s Hospital, part of University of Wisconsin’s Carbone Cancer Center. The trial is led by Kenneth DeSantes, M.D., Division Head and Paul Sondel, M.D., Ph.D, Research Director of Pediatric Hematology, Oncology and Bone Marrow Transplant at the University of Wisconsin. “We believe this novel immunotherapy approach may potentially provide some benefit for children with relapsed or refractory neuroblastoma, whose prognosis has historically been extremely poor despite the use of aggressive chemotherapy regimens. The NK cells utilized in this trial have an enhanced ability to kill tumor targets. We anticipate that the administration of these activated NK cells, given in combination with an immunocytokine that specifically recognizes neuroblastoma, will result in significant anti-cancer activity,” said Dr. DeSantes.
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           “Previous research has already shown that adoptive transfer of haploidentical NK cells can be effective in reducing disease without the side effects of graft-versus-host disease,” said Solving Kids’ Cancer Executive Director Scott Kennedy. “We are very excited to support a trial addressing the need for treating children with immunotherapy in this cutting-edge clinical trial because they currently have very toxic treatment options.”
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           For more information about this clinical trial visit 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://clinicaltrials.gov/ct2/show/NCT03209869" target="_blank"&gt;&#xD;
      
           https://clinicaltrials.gov
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    &lt;/a&gt;&#xD;
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    &lt;span&gt;&#xD;
      
           Or contact Cancer Connect: 800-622-8922 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="mailto:cancerconnect@uwcarbone.wisc.edu" target="_blank"&gt;&#xD;
      
           cancerconnect@uwcarbone.wisc.edu
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  &lt;/p&gt;&#xD;
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    &lt;strong&gt;&#xD;
      
           CONTACT:
          &#xD;
    &lt;/strong&gt;&#xD;
    &lt;span&gt;&#xD;
      
               Kristi McKay
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
                        Solving Kids’ Cancer
          &#xD;
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
                        
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="mailto:kristi@solvingkidscancer.org" target="_blank"&gt;&#xD;
      
           kristi@solvingkidscancer.org
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
                        212-588-6624
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
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  &lt;/p&gt;&#xD;
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           ###
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  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           About Solving Kids’ Cancer
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;span&gt;&#xD;
      
           Created by two fathers who lost children to pediatric cancers, Solving Kids’ Cancer is committed to significantly improving the survivorship of the deadliest childhood cancers. One hundred percent of all donations are used to find, fund, and manage clinical trials and scientific programs to rapidly develop the most effective treatments and cures. Solving Kids’ Cancer is a 501 (c) (3) nonprofit charity. To learn more about our work please visit 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://www.solvingkidscancer.org/" target="_blank"&gt;&#xD;
      
           solvingkidscancer.org
          &#xD;
    &lt;/a&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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    &lt;/span&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           About The Catherine Elizabeth Blair Memorial Foundation
          &#xD;
    &lt;/strong&gt;&#xD;
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           In 2011, Ellen and Tom Blair created The Catherine Elizabeth Blair Memorial Foundation to continue their daughter’s valiant fight against neuroblastoma. Their mission is to support the research and development of new treatments for neuroblastoma, so that one day, families will no longer face the tragedy of losing a child to the disease. To learn more visit 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="http://blairfoundation.org/" target="_blank"&gt;&#xD;
      
           blairfoundation.org
          &#xD;
    &lt;/a&gt;&#xD;
    &lt;span&gt;&#xD;
      
           .
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  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
    &lt;strong&gt;&#xD;
      
           About Wade’s Army
          &#xD;
    &lt;/strong&gt;&#xD;
  &lt;/p&gt;&#xD;
  &lt;p&gt;&#xD;
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           Wade’s Army is a nonprofit organization standing arm in arm with families at the front lines of the fight against neuroblastoma. Wade’s Army supports research programs and hospitals fighting to find a cure as well as raising funds directly for children and parents affected by childhood cancer. To learn more visit 
          &#xD;
    &lt;/span&gt;&#xD;
    &lt;a href="https://www.wadesarmy.org/" target="_blank"&gt;&#xD;
      
           wadesarmy.org
          &#xD;
    &lt;/a&gt;&#xD;
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      <pubDate>Tue, 13 Nov 2018 21:01:04 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/clinical-trial-harnesses-power-of-natural-killer-cells</guid>
      <g-custom:tags type="string">News &amp; Views,Press Releases</g-custom:tags>
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      <title>A Welcome Gift for the Pediatric Brain Tumor Community</title>
      <link>https://www.solvingkidscancer.org/blog/a-welcome-gift</link>
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      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Holiday_Gift_edited_3.png" alt="A green and white flyer for a holiday gift."/&gt;&#xD;
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      <pubDate>Sun, 10 Dec 2017 19:45:04 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/a-welcome-gift</guid>
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      <title>The Promise of Immunotherapy</title>
      <link>https://www.solvingkidscancer.org/the-promise-of-immunotherapy</link>
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      <pubDate>Fri, 01 Dec 2017 21:46:19 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/the-promise-of-immunotherapy</guid>
      <g-custom:tags type="string">Videos</g-custom:tags>
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      <title>Your Support is Advancing Breakthroughs in ETMR Research</title>
      <link>https://www.solvingkidscancer.org/bibi-fund-for-brain-tumor-research</link>
      <description />
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           Trailblazing Hope for ETMR Research: A Progress Update
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           Because of your generosity to the Bibi Fund through Solving Kids’ Cancer, Dr. Mariella Filbin and her team at Boston Children’s Hospital and Dana-Farber Cancer Institute is making incredible strides in the fight against 
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           ETMR
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           , a devastating pediatric brain cancer. Your support has empowered her to investigate the root causes of this disease and uncover promising new paths to treatment.
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           Dr. Filbin’s work exemplifies the “bench-to-bedside” approach, turning cutting-edge science into potential treatments. Thanks to you, this journey is gathering momentum, providing hope for children and families affected by this relentless disease.
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           This Breakthrough Research Powered by a New Technology – single-cell RNA sequencing
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           Dr. Filbin hypothesized that an overabundance of a specific microRNA cluster on chromosome 19 (C19MC) triggers EMTRs. Your donation allowed her to explore the inner workings of ETMR cells using single-cell RNA sequencing and to uncover additional segments of the underlying molecular pathways that may play a contributory role.
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           Fruit salads not smoothies: Single-cell sequencing’s virtue
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           Using the single-cell sequencing technique, Dr. Filbin sifted through each tumor cell, unveiling individual gene expression profiles rather than analyzing an aggregate collection of cells. When a pulverized tissue mixture is relied upon to investigate tumors, it obscures important contributions from single cells. To borrow an analogy suggested by the developers of one brand of single-cell sequencing technology: Pulverized tissue can be compared to a smoothie and single-cell sequencing to a fruit salad. While a smoothie gives the overall flavor, a fruit salad allows for the sampling of each individual fruit. Single-cell sequencing, therefore, allows a researcher to sample or glean the genome expression profile in every cell.   
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            Figure 1 Below, Source Mariella Filbin lab
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           Key Findings: How ETMR Develops and Understanding the Role of Stem Cells
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           Dr. Filbin discovered that ETMR is driven by stem cells stuck in an immature state. Instead of maturing and becoming healthy cells, these stem cells keep dividing uncontrollably, becoming cancerous. From your support, Dr. Filbin identified key molecular “roadblocks” that prevent these cells from maturing—offering new avenues for therapeutic intervention. Her discoveries are creating new opportunities to develop therapies that could restore normal cell development—or eliminate cancerous cells entirely.
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           Her research has identified key culprits that disrupt healthy cell development, giving her a clear path to target the disease at its root.
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           Your Impact: Laying the Groundwork for Treatments
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           Here’s how your generosity has propelled this groundbreaking research forward:
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            Mapping the Drivers of ETMR:
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             Dr. Filbin’s team found that an overabundance of a microRNA cluster called C19MC, combined with a protein named LIN28A, drives ETMR. These two culprits work together to prevent cells from maturing and cause them to turn malignant.
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            Revealing Hidden Pathways:
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             Surprisingly, not all cells in ETMR tumors become cancerous. Some differentiate into “neuron-like” cells, which were thought to be harmless but are now understood to fuel tumor growth. These cells release chemicals that activate harmful signaling pathways, such as Notch and fibroblast growth factor (FGF), helping the tumor thrive. These “hidden helpers” that look harmless actually release signals that fuel the growth of tumor cells. By blocking these signals, we can stop the tumors from spreading.
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            Laying a Therapeutic Foundation:
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             Early experiments blocking these pathways and proteins have shown that cancer cells struggle to survive, marking a critical step toward effective treatments.
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           A Brighter Future: Promising New Treatments
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           Thanks to your support, Dr. Filbin and her team have identified three key approaches for treating ETMR tumors and is now accelerating efforts to translate these findings into real-world treatments:
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            Blocking Growth Pathways &amp;amp; Signals:
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             Tumor growth relies on two pathways, Notch and FGF. By using inhibitors, Dr. Filbin aims to disrupt these pathways, stopping harmful signals from neuron-like cells. Some of these inhibitors are already FDA-approved for other cancers, potentially speeding up the timeline for ETMR treatment.
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            Targeting LIN28A:
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             LIN28A interferes with the body’s natural tumor suppressors. By blocking LIN28A, Dr. Filbin hopes to restore the body’s ability to fight ETMR tumors naturally. She is collaborating with top experts to develop and test these inhibitors.
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            Silencing C19MC:
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             This genetic driver of ETMR can be turned off using cutting-edge therapies called locked nucleic acid (LNA) inhibitors. These specialized molecules are designed to stop harmful microRNAs from forming, helping stem cells mature properly and preventing tumor growth.
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           Bringing Therapies to Life
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           Dr. Filbin’s team is testing these therapies in advanced models to find the best treatments, doses and possible synergistic combinations. Here’s what’s happening next:
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            Testing drugs in 
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            mini-brain replicas
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             grown from stem cells.
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            Using patient-derived tumor models to see how therapies perform in living systems.
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            Combining these new drugs with existing treatments to maximize their effectiveness.
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           Your Support Changes Lives
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           Thanks to you, Dr. Filbin’s research is closer than ever to bringing life-saving therapies to children with ETMR. Your generosity provides hope to families facing the unimaginable, ensuring that innovative science continues to thrive.
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           Together, we are moving closer to a world where no child has to suffer from ETMR.
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      <pubDate>Tue, 11 Jul 2017 19:43:18 GMT</pubDate>
      <author>kristi@solvingkidscancer.org (Kristi McKay)</author>
      <guid>https://www.solvingkidscancer.org/bibi-fund-for-brain-tumor-research</guid>
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      <title>Targeted Therapy for Children with ALK-Driven Neuroblastoma</title>
      <link>https://www.solvingkidscancer.org/blog/targeted-therapy-for-children-with-alk-driven-neuroblastoma</link>
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           Investigational 3rd generation targeted drug to be studied as a treatment for pediatric patients with relapsed or refractory ALK-driven neuroblastoma
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            ﻿
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           March 29, 2017 – NEW YORK, NY: Lorlatinib, an investigational drug candidate currently in late-stage clinical development for the treatment of lung cancer may also prove effective for the treatment of the pediatric cancer neuroblastoma. Solving Kids’ Cancer is leading an international effort of like-minded nonprofits to provide nearly $400,000 of collaborative funding for an innovative clinical trial to bring a potentially life-saving therapy to kids.
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           The phase I trial will be co-led by Dr. Yael Mossé at Children’s Hospital of Philadelphia (CHOP) and Dr. Araz Marachelian at Children’s Hospital of Los Angeles (CHLA), and will be conducted in 14 hospitals in the United States and Canada through the New Approaches to Neuroblastoma Therapy (NANT) consortium, as well as two European sites including Royal Marsden in London and Institut Curie in Paris. The study focuses on a subset of neuroblastoma patients with mutations in the anaplastic lymphoma kinase (ALK) gene. Abnormal ALK genes are found in 15 percent of high-risk neuroblastoma patients and portend a very poor prognosis.
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           The primary objective of this study is to identify a recommended Phase II dose and assess the anti-tumor activity as a result of administering this investigational drug candidate in pediatric patients with ALK-driven neuroblastoma. Lorlatinib is a next-generation ALK/ROS1 tyrosine kinase inhibitor that has been recently reported to show very compelling responses in lung cancer patients with ALK aberrations. The drug was specifically designed to inhibit tumor mutations that drive resistance. One important feature of this drug is that it penetrates the blood-brain barrier and may be effective in patients with relapsed neuroblastoma in the central nervous system.
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           “Lorlatinib has shown dramatic results in the lab against ALK+ neuroblastoma tumors in mice,” said Dr. Yael Mosse, the physician-scientist who discovered ALK mutations in neuroblastoma and led the preclinical investigations at the Children’s Hospital of Philadelphia. “If this trial proves successful, we expect the drug to quickly become part of frontline therapy in children with ALK-driven neuroblastoma – which is a tremendous accomplishment in cancer research, overall.”
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           The hope is that this trial will provide a foundation for future work, which could lead to approval by health authorities for this use. Only three drugs have ever been approved for pediatric cancers, and this would set a remarkable precedent for rapid introduction of a new drug.
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           “We are very pleased to be supporting a clinical trial site at the Royal Marsden Hospital, London, which enables children in the UK to access this exciting new agent close to home,” said Stephen Richards, Chief Executive Officer, Solving Kids’ Cancer Europe. “The trial, which is also accessible in continental Europe, marks a significant international collaboration and is something we are very proud of — effectively speeding up the advancement of better treatment for children with neuroblastoma.”
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           Childhood cancer is the leading cause of death by disease in the United States, and neuroblastoma is pediatric cancer that strikes mostly infants and young children. The aggressive cancer originates in the sympathetic nervous system and manifests as tumors in the neck, abdomen, and pelvis.
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           “We are excited to see such an innovative clinical trial come to fruition, and we are grateful to our partners who helped fund the gap so that we can continue in our joint mission to improve the overall survival rates for children diagnosed with neuroblastoma,” added Scott Kennedy, Executive Director, Solving Kids’ Cancer US. “This study represents an unprecedented collaboration between academic researchers, industry and charities to rapidly advance an exciting new agent, and provide access to the children who need it.”
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           ###
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           COLLABORATIVE PARTNERS SUPPORTING THIS STUDY:
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           Solving Kids’ Cancer USA/EUR
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           The Band of Parents
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           The Ronan Thompson Foundation
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           The Children`s Neuroblastoma Cancer Foundation
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           Wade’s Army
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           The Catherine Elizabeth Blair Memorial Foundation
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           The Evan’s Victory Against Neuroblastoma Foundation
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           Also supported by community funds from families including Harrison Bate and Ellen’s Friends and Family
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  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/social_media_lorlatinib-509649c4.png" alt="A group of logos for various organizations including band of parents bound by hope and solving kids ' cancer"/&gt;&#xD;
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      <pubDate>Wed, 29 Mar 2017 19:47:53 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/targeted-therapy-for-children-with-alk-driven-neuroblastoma</guid>
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      <title>Advocacy in Action</title>
      <link>https://www.solvingkidscancer.org/blog/advocacy-in-action</link>
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           Advocacy In Action
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           How a nonprofit stood up to the government on behalf of children with cancer and potentially saved lives.
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           As deplorable as it may sound, the government healthcare system in the UK recently decided to deny access to dinutuximab, an FDA/EMA-approved antibody treatment proven to increase survival rates for children with cancer. With so many changes taking place in US healthcare and beyond, this scenario has left many parents around the world feeling helpless and concerned over “what’s next.”
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           The drug, dinutuximab, is the only treatment approved specifically for neuroblastoma – an aggressive childhood cancer that has a current 5-year survival rate of less than 50%. Dinutuximab has shown to increase this survival rate in a comprehensive study conducted in the US. The decision to refuse access to this antibody would have profound implications for children with this diagnosis.
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           The ruling begs the question, “What if it was your child who needed this drug?” For hundreds of parents in the UK, it is their child, and without hesitation, Solving Kids’ Cancer (SKC) decided to appeal this decision in an effort to change government policy on their behalf. This marks the first time a charity has taken such action without a drug company involved.
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           With pro-bono legal assistance provided by Covington and Burling, SKC went before the National Institute for Health and Care Excellence (NICE) and presented solid evidence for the appeal, which was ultimately upheld. Leveraging insights from their recent research on 
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    &lt;a href="https://www.outlookindia.com/igaming/uk/online-casinos/non-gamstop-casinos/" target="_blank"&gt;&#xD;
      
           non gamstop casino sites
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           , the legal team applied innovative strategies to strengthen their case. This means that NICE will go back to reevaluate the situation under new criteria—improving the odds that they may override their original decision to deny children with neuroblastoma access to the potentially life-saving treatment.
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           Children with cancer need true advocates to fight for them when such change is needed. This small group of disenfranchised children otherwise fell under the radar, and no one else was paying attention to the potential consequences.
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           Solving Kids’ Cancer is a parent-led nonprofit that finds, funds, and advocates for breakthrough treatment options to cure children and support families affected by a pediatric cancer diagnosis by sharing information and negotiating on their behalf. SKC recently became an international organization in order to better address the unmet needs of children both in North America and in Europe, and coordinating the appeal was one of the first acts where they made a real impact utilizing this model.
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            ﻿
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           For now, the UK government has gone back to the drawing board based on the new criteria outlined in SKC’s appeal, making the efforts against NICE a tremendous success. Today, families in the UK are hopeful that they won’t be forced to uproot their families and travel to the US for access to this treatment. If a decision is made otherwise, they can rest assured knowing that Solving Kids’ Cancer will continue to advocate on their behalf.
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      <pubDate>Fri, 18 Nov 2016 19:49:35 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/advocacy-in-action</guid>
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    <item>
      <title>SKC Formally Appeals NICE Decision</title>
      <link>https://www.solvingkidscancer.org/blog/skc-formally-appeals-nice-decision</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/2018-Transparent-Logo-e1564516493142-3f2c8aeb.png" alt="The logo for solving kids ' cancer shows a pink butterfly."/&gt;&#xD;
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           FOR IMMEDIATE RELEASE
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           NICE HEARS APPEAL ON REFUSAL OF CHILDREN’S CANCER TREATMENT
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           First Appeal Against NICE Decision Led by a Charity
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           September 30, 2016 – New York, NY: The National Institute for Health and Care Excellence (NICE) heard an appeal led by Solving Kids’ Cancer (SKC) against its recent decision to deny children in the UK treatment that is proven to significantly increase the chance of survival for children diagnosed with an aggressive childhood cancer, neuroblastoma.
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           This is the first appeal against a NICE decision made by a charity acting alone. Solving Kids’ Cancer, a nonprofit based in New York, teamed up with their partner organization in the UK to lodge an appeal in July 2016 when NICE first announced the decision to refuse funding this potentially life-saving drug in England and Wales. NICE accepted that the charity has valid grounds for appeal and the full hearing was held in Manchester on September 30.
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           The SKC team was made up of both US-based and UK-based parent representatives, all of whom have lost a child to neuroblastoma, and one parent whose daughter survived neuroblastoma as a result of the same treatment NICE is seeking to deny.
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           John Rogers, a scientist and the father of Stella who survived neuroblastoma after receiving this treatment in the US, said: “Dinutuximab, is the only treatment specifically developed to treat cancer in children and is the standard treatment in the US, Australia, and Canada. It has been tested since the mid-1980s and has been proven to significantly improve survival in these children over the long term. If NICE does not accept this appeal, children in the UK could only hope to access unproven treatments through clinical trials, which is unethical when there is an approved and effective drug available.”
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           “In 2009, we raised £250,000 to take our 2-year-old daughter, Stella, to the US for dinutuximab therapy. She is now a happy, healthy 8-year-old. Surely children in the UK have just as much right to this chance of survival as children in other parts of the world?”
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           Solving Kids’ Cancer has five representatives giving evidence, including expert life sciences regulatory lawyer and advocate, Grant Castle. Dr. Castle is a partner in the London office of Covington &amp;amp; Burling LLP, who has provided his services on a pro bono basis, and who presented the charity’s case at the hearing.
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           Speaking before the hearing, Steve Richards, CEO of Solving Kids’ Cancer UK, said:
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           “This is the first time that a charity has made a unilateral appeal against a NICE decision, but we cannot stand by and allow NICE to effectively condemn UK children diagnosed with this devastating illness to a reduced chance of survival. By their own assessment, NICE agrees that dinutuximab is a novel approach that saves the lives of some children and extends the lives of others. By sticking rigidly to very narrow appraisal criteria, NICE failed to account for any of the unique contexts, challenges, and considerations that exist within pediatric oncology. The cost of this treatment for the very small number of children in the UK who could benefit was projected by NICE at just £2m.”
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            ﻿
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           “If this decision stands, parents will have to raise in excess of £500,000, as well as enormous reserves of emotional resilience and determination, to take their sick child abroad for the greater chance of survival dinutuximab therapy provides. We are committed to doing everything in our power to ensure that this flawed decision is reversed.”
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           ABOUT SOLVING KIDS’ CANCER
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           Solving Kids’ Cancer is dedicated to significantly improving survivorship of the deadliest childhood cancers. Since 2008, SKC has supported and managed 26 research projects, introducing 18 new treatment options, and validating 14 agents for further use in combination with other drugs. Solving Kids’ Cancer is a 501(c)(3) public charity.. To learn more about their work, visit solvingkidscancer.org
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           ###
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      <pubDate>Mon, 15 Aug 2016 19:51:35 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/skc-formally-appeals-nice-decision</guid>
      <g-custom:tags type="string">Press Releases</g-custom:tags>
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      <title>Access to Cures Should Have No Borders</title>
      <link>https://www.solvingkidscancer.org/blog/access-to-cures-should-have-no-borders</link>
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           British Government Denies Children Access to Proven Cancer Treatment for Neuroblastoma
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           Decision will force UK families to travel abroad to access treatment
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           The British healthcare system has rejected an FDA/EMA-approved treatment proven to increase survival rates for children with cancer. NICE (National Institute for Health and Care Excellence) has rejected access to the drug across the UK, stating cost as the reason. However, when analyzing the real expense on taxpayers, the cost amounts to less than 3 pence per person, per year, in order to give these children access to the life-saving antibody.
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           The immunotherapy drug, dinutuximab, is the only treatment approved specifically for high-risk neuroblastoma  an aggressive childhood cancer that has a current 5-year survival rate of less than 50%. Dinutuximab was shown to increase this survival rate in a comprehensive study conducted in the US. The decision to refuse access to this antibody will have profound implications for children with this diagnosis. Although antibody therapy is not a cure for all, it has been shown to significantly increase the chance of survival and children are alive today, living a full life because of this medication.
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           Solving Kids’ Cancer EU has taken action by submitting a formal appeal to NICE on the grounds of inappropriate metrics. The decision was made using calculations for cost-effectiveness in large populations of adult chronic diseases, not rare and deadly childhood cancers. Such a decision is grossly unfair and will impact all families with neuroblastoma and the entire childhood cancer community because it allows access to cures to be disrupted across borders. In the US, Solving Kids Cancer is supporting the European efforts by initiating a letter of support for the appeal signed by several leading US-based pediatric oncologists.
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           Scott Kennedy, Founder of Solving Kids Cancer US, exclaimed, Cures should have no borders! Families who are facing this heartbreaking diagnosis will now have to worry about fundraising just so they can afford to travel to other countries for treatment. This is an absurd injustice in a country with one of the most advanced health systems!
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           How you can help:
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           –  Please help us raise awareness by sharing this news on social media platforms
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           –  Share this information with your local media outlets
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           –  Support the efforts of SKC-EU by 
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    &lt;a href="https://solvingkidscancer.org.uk/sending-a-letter-to-your-mp/" target="_blank"&gt;&#xD;
      
           sharing this link
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            with anyone you may know who resides in the UK
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      <enclosure url="https://irp.cdn-website.com/329cef6c/dms3rep/multi/NICE.png" length="1503596" type="image/png" />
      <pubDate>Sat, 30 Jul 2016 19:52:57 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/access-to-cures-should-have-no-borders</guid>
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      <title>Accelerating Research For Pediatric Brain Tumors</title>
      <link>https://www.solvingkidscancer.org/accelerating-research-for-pediatric-brain-tumors</link>
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      <pubDate>Fri, 15 Apr 2016 21:45:18 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/accelerating-research-for-pediatric-brain-tumors</guid>
      <g-custom:tags type="string">Videos</g-custom:tags>
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      <title>Children’s Cancer is Unprofitable and Ignored – An SKC Featured Article</title>
      <link>https://www.solvingkidscancer.org/blog/childrens-cancer-unprofitable-ignored</link>
      <description />
      <content:encoded>&lt;div&gt;&#xD;
  &lt;img src="https://irp.cdn-website.com/329cef6c/dms3rep/multi/Newsweek_Childrens_Cancer_is_Unprofitable_and_Ignored.png" alt="A blurred image of a person holding a cell phone."/&gt;&#xD;
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      <pubDate>Mon, 20 Jul 2015 19:54:19 GMT</pubDate>
      <guid>https://www.solvingkidscancer.org/blog/childrens-cancer-unprofitable-ignored</guid>
      <g-custom:tags type="string">News &amp; Views</g-custom:tags>
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      <title>Understanding the Landscape, Strengthening the Science, Curing and Caring for the Child</title>
      <link>https://www.solvingkidscancer.org/understanding-the-landscape-strengthening-the-science-curing-and-caring-for-the-child</link>
      <description />
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      <pubDate>Mon, 08 Jun 2015 21:45:55 GMT</pubDate>
      <author>duda@neonone.com</author>
      <guid>https://www.solvingkidscancer.org/understanding-the-landscape-strengthening-the-science-curing-and-caring-for-the-child</guid>
      <g-custom:tags type="string">Videos</g-custom:tags>
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