CARE FOR RARE Collaborative Awards $600,000 to Advance Research in Aggressive Childhood Brain Tumors
New York, NY Sept 1, 2025 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).
The recipients are:
- Johannes Gojo, MD, PhD, Professor of Pediatric Neuro-Oncology, Medical University of Vienna, Austria, for “Advanced Resistance Mapping and Overcoming Relapse of ETMR (ARMOR)”
- Eric Raabe, MD, PhD, Associate Professor of Pediatric Oncology and Pathology, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University School of Medicine for “Combined epigenetic targeting in ATRT”
- Rajeev Vibhakar, MD, PhD, Professor, Department of Pediatrics, Neuro-Oncology Division, University of Colorado, Denver for “Targeting CDK7 for AT/RT Therapy”
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.
About ETMR and ATRT
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.
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.
About The CARE FOR RARE Collaborative
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:
Bibi Fund The Jonah Finn Foundation
Gold Ribbon Kids Cancer Foundation Solving Kids’ Cancer
Hope4ATRT Foundation Ty Louis Campbell Foundation
“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.”
About the Funders
Solving Kids’ Cancer 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.
Hope4ATRT Foundation, 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.
Gold Ribbon Kids Foundation 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.
The Bibi Fund for Rare Childhood Cancer Research funds pediatric cancer research with a focus on the rarest and most aggressive childhood brain cancers.
The Jonah Finn Foundation’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.
###
For media inquiries contact Kristi McKay
kristi@solvingkidscancer.org
