Advocate Insights | In My Game, Everybody Wins: A Mother’s Case for Federal Investment in Pediatric Brain Tumor Research
Misha Mehta, PhD - in honor of Neev
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Advocate Insights | In My Game, Everybody Wins: A Mother’s Case for Federal Investment in Pediatric Brain Tumor Research
My son Neev was four years old when he slid his winning Bingo card across the table to another child. “In my game,” he said, “everybody wins.” He meant it. He lived it. He was the kind of child who made sure every new kid at preschool had someone to sit with at lunch, no teacher had to ask. He insisted his dad “go back in time and fix it” when an unfair goal was scored in our backyard. Fair was fair, with Neev. Always.
In August 2020, in the middle of a global pandemic, Neev was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), now reclassified as Diffuse Midline Glioma. He was four. There is still no cure. There has never been an FDA-approved therapy beyond radiation. Median survival is nine to twelve months.1-3 Over the next fifteen months, Neev participated in four Phase 1 clinical trials,access made possible only because other families, years before, had fought hard enough to fund the research that built those trials in the first place. He passed away one month after his sixth birthday. He never lost a tooth. He never walked into kindergarten. He never played his first soccer game.
I am a scientist by training, but Neev’s mother first. That is the order in which I now carry every conversation I have about cancer research. When I joined Friends of Cancer Research (Friends) as an Advisory Advocate and had a chance to represent them on Capitol Hill with One Voice Against Cancer (OVAC), I went for Neev. I went for his big brother Rayaan, who lost his best friend before either of them was old enough to understand why, and I went for every family who has heard your child has “DIPG” and “there is nothing we can do” or “go home and make memories.”
What’s at Stake
Brain tumors are the leading cause of cancer-related death in children and yet the Pediatric Brain Tumor Consortium (PBTC), the only federally funded clinical trial network dedicated to pediatric brain tumors, has lost all funding. Let that sit. The infrastructure built over decades to test new therapies in the children most likely to die of cancer has been dismantled. The Phase 1 trials Neev had access to do not happen without that scaffolding. The next mother hearing “DIPG” for the first time will have fewer options, unless we change course. This failure extends beyond the federal level. Last year, I helped lead the development of the childhood cancer chapter for the California Comprehensive Cancer Control Plan, and it was a hard-fought inclusion. Childhood cancer, the leading cause of disease-related death in children in this country, had to be argued into the state’s blueprint for cancer control. The federal pipeline is not the only one that fails our children. State plans, where Centers for Disease Control and Prevention (CDC) dollars become community-level action, often miss them entirely. When we shrink CDC’s cancer programs, we shrink the connective tissue between national research and the families who need it.
What’s Possible
The Advanced Research Projects Agency for Health (ARPA-H) recently launched the Pediatric Care eXpansion (PCX) program, a $50 million federal initiative to build the first nationally connected pediatric data infrastructure spanning childhood cancers and rare diseases. PCX is designed to integrate clinical and research data in real time across a shared infrastructure connecting all 200 Children’s Oncology Group hospitals, so that no child has to be a patient in a fragmented system, and no family has to carry a binder of electronic health records and MRI files on CDs from one institution to the next. Pediatric brain tumors were chosen as the first use case, not because PCX is limited to our community, but because decades of philanthropic and federal investment in the Children’s Brain Tumor Network and the Real-time Analysis and Discovery in Integrated And Networked Technologies (RADIANT) platform at the Children’s Hospital of Philadelphia had made our community data ready. When Neev moved between hospitals during his treatment, his imaging, his molecular diagnostics, and his treatment history were fragmented across systems and our family carried the gap between them, the binder in one hand and the CDs in the other. PCX is being built so that the next family does not have to. I was honored to represent the patient and family voice at the ARPA-H PCX Roadshow, because PCX is what federal investment looks like when it is allowed to do its job.
The Ask
As part of Friends Advisory Advocates, I had the privilege of attending Capitol Hill days with OVAC. OVAC is asking Congress to prioritize cancer research and prevention in FY27 by appropriating $51.3 billion for the NIH, $7.99 billion for the National Cancer Institute, $1.5 billion (flat funding) for ARPA-H, and $482.9 million for the CDC’s Division of Cancer Prevention and Control. These are not abstract numbers. $51.3 billion is the difference between programs like Pediatric Early Phase Clinical Trial Network (the entity that will absorb PBTC) can continue to serve the most vulnerable communities. $7.99 billion is the difference between the next Phase 1 trial existing or not for the next four-year-old. $1.5 billion for ARPA-H is what allows PCX to keep building the system backbone that will, one day, mean fewer children fall through the cracks of fragmented care. And $482.9 million for CDC is what ensures that the work I helped do in California has the federal dollars behind it to matter.
Advocacy, I have learned, is not loud. It is steady. It is showing up, for one meeting, then the next and refusing to let anyone forget the children whose names are not in the room. Neev’s name means foundation in Hindi. He was, in every sense, ours. And in the time we have, we are going to build something on top of that foundation that means a different ending for the next family.
In my game, everybody wins. That was his promise. It is now mine.
Misha with her state advocate team and OVAC members on the Hill during OVAC’s Grassroots Lobby Day (2026).
Author Biography
Misha Mehta, PhD, MS, BCPA, is a scientist by training, a Board-Certified Patient Advocate, and the mother of her beloved son, Neev, whose brain tumor journey continues to shape her work. She is the President of the Neev Kolte Foundation, where she works with families, researchers, clinicians, and policymakers to advance rare cancer research, break down data silos, and strengthen support for children and families.
Sources
Song EZ, Timpanaro A, Meechan M, et al. Engineered CXCR3-A expression enhances B7-H3-targeting CAR T cell migration and efficacy against diffuse intrinsic pontine glioma. Nat Commun. 2025;16(1):9914. Published 2025 Nov 11. doi:10.1038/s41467-025-64861-6
Upreti M, Petrosyan A, Thornton ME, et al. Multicellular tumor-stromal interactions recapitulate aspects of therapeutic response and human oncogenic signaling in a 3D disease model for H3K27M-altered DIPG. Oncogene. 2025;44(39):3694-3712. doi:10.1038/s41388-025-03533-7
Khorsandi K, El Ghorayeb L, VanNoy E, Haydar D. Reprogramming tumor-associated macrophages in DMG/DIPG: emerging molecular and biophysical strategies. Front Immunol. 2026;17:1788956. Published 2026 Mar 17. doi:10.3389/fimmu.2026.1788956
