Pediatric Brain Tumor Foundation

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Matthew: Long-term Survivorship with a High-Grade Glioma 

Ten-year-old Matthew spends his time playing with his older siblings, telling jokes, and dreaming of becoming a train driver. As he reaches for his dreams throughout his life, he will face some challenges due to his pediatric brain tumor diagnosis. At just 28 months old, Matthew was diagnosed with a high-grade brainstem glioma-- an aggressive brain tumor he still battles to this day. His dreams may look different than his brothers and sisters, but his family embraces Matthew’s needs and tackles the challenges together, no matter what. 

December Advocacy Alert: Urgent Action Needed for Critical At-Risk Legislation; Alliance for Childhood Cancer’s Upcoming Action Days

Families affected by pediatric brain tumors face unique and profound challenges. Existing treatments are decades old and often do more harm than good to children’s developing brains, while administrative red tape causes unnecessary delays in families’ ability to access lifesaving care. To truly end childhood brain cancer as we know it, policymakers need to understand these challenges and commit to addressing them. Here are two opportunities to join your voice with other advocates and remind legislators that children with brain tumors deserve better.

Patient Advocate Participates in Congressionally Directed Medical Research Programs’ Peer Reviewed Cancer Research Program for the Department of Defense

The Congressionally Directed Medical Research Programs’ (CDMRP) Peer Reviewed Cancer Research Program (PRCRP) has been charged by U.S. Congress since Fiscal Year 2009 to fund innovative basic, applied, and translational cancer research to support Service members, their families, and the American public. The Pediatric Brain Tumor Foundation nominated patient family advocate Colin Raybin as a consumer advocate to participate in this year's evaluation of research applications submitted to the PRCRP.

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