National Brain Tumor Society Advocate From Your State Day 2025

December 11, 2021 the world as I knew it came to a halt. Overnight I became a full-time caregiver when my daughter Emily, just 21 years old, was diagnosed with a rare and devastating brain tumor: pleomorphic xanthoastrocytoma, WHO grade 3. Her tumor carried the BRAF V600E and TERT mutations, was negative for MGMT methylation, and matched the rare anaplastic PXA methylation class.

Emily was not just a patient. She was a world-class opera singer, a humanitarian, and a young woman with her entire life ahead of her. She had an extraordinary gift, and she worked relentlessly at it. She was funny, stubborn, compassionate, fierce, and she gave unilaterally without expectation. While she had a little time in between surgeries, life-altering medications, and radiation, she got to live just a little bit — but what she wanted was a full life. I held her MPOA and learned she had quietly saved her eggs so that when she finally beat this tumor, she could still give life. That was Emily: even in the face of relentless uncertainty, she thought about giving more to the world.

Despite surgery, targeted therapy, and proton radiation, her tumor only slowed briefly before progressing at a rate my own models could not keep up with. I was processing multiple models nightly, working from every ounce of data I could squeeze out of her hospital records each day. On February 25, 2025, Emily died at 24. When she passed away, the world lost an artist, her brothers lost their sister, and my wife and I lost a part of our souls. I lost a little more of mine than most, having been the one to make the tough calls — including her time of death. That is something no parent should have to endure.

Her journey was marked not just by seizures, strokes, and repeated surgeries, but by the absence of research that could have guided her doctors. Her care team at Northwestern and elsewhere often had no evidence-based answers. Too many physicians do not understand this tumor because research has been starved of funding.

The practical cost of that starvation is cruel. Promising therapies remain stalled in trials. Biomarker studies are incomplete. Children and young adults with tumors like Emily’s are treated with guesswork, borrowing protocols designed for other cancers. Families like mine are left to become their own researchers.

So I did. I authored white papers tracing the origins and evolution of Emily’s tumor. I built a Cancer Patient Advocacy Protocol to guide other families through the maze we faced. I organized and funded genomic testing not only of Emily’s tumor but of our family’s germline across three generations. I wrote a practical cancer guide for patients and caregivers to use tomorrow when medicine fails them today. We have handcuffed our best and brightest with the equivalent of dry-erase markers and white boards to solve some of the most complex medical problems we face, particularly in the central nervous system, while giving them no time, no funding, and no support for creating new protocols or for monitoring.

But none of this can bring Emily back. I would have given anything to save her. Mistakes were made, including the use of radiation that supercharged a tumor once considered “manageable.” At autopsy her tumor was classified as a unique CNS subclass — literally one of one — to be studied later. She knew this, and she chose to participate in research to help others even as she was dying. One of my last promises to her was to continue that work.

This is why I am writing you in connection with Advocate From Your State Day. Patients, families, and advocates have raised their voices. I need you to hear mine.

We are calling on you to:

• Co-sponsor the BRAIN Act (H.R.2767/S.1330) to accelerate brain tumor research, expand clinical trials, and strengthen innovative care.

• Support Fiscal Year 2026 Appropriations for Brain Tumor Research by increasing NIH and NCI funding, reinstating glioblastoma research at the Department of Defense, and expanding the Peer Reviewed Cancer Research Program.

• Support a Childhood Cancer Package to improve pediatric drug development, expand trial access, and reduce delays in care for children on Medicaid.

Emily’s story is one note in a chorus of loss. I will keep fighting, researching, and modeling alone and until my own dying breath if I have to, but together we can turn loss into momentum and momentum into cures. Please do not let another family bury their child because we failed to fund the science that could have saved them. The answers are out there. We just need you to fund the work, with urgency and with hope.

Christopher J Kouzios CIO/CTO/AI Disruptor and Emily’s Dad