When our daughter Adelia was diagnosed with Diffuse Midline Glioma, or DMG in February 2023, we were propelled into a world that needs our attention and support. We quickly learned how vastly underfunded pediatric cancer research is, and how promising breakthroughs in labs can never reach patients due to lack of funding, or that sometimes a trial will be cut off due to lack of funding, causing patients to abruptly change their treatment plans.
Only 4% of all federal funding for cancer research is allocated for pediatric cancer research. And of that 4%, only 1% is allocated for pediatric brain cancer - amounting to a mere 0.04% of all federal funding for cancer research. That number becomes even more startling when you consider the fact that pediatric central nervous system (CNS) tumors are the leading cause cause of cancer mortality in children.
Each year, 300 to 500 families in the United States receive the same diagnosis we did. And here's a fact that brings home the urgency of our mission: the only standard of care for DMG is radiation, a treatment that has remained unchanged since Neil Armstrong's daughter received her diagnosis in 1962.
We can, and we must, do better for our children.
For 15-months, Adelia battled through 5 brain surgeries, 63 radiation treatments, and countless other pokes, scans, and procedures. While she had every right and reason to complain, she remained hopeful, selfless, and positive throughout her fight and exuded the utmost bravery and resilience until the very end, passing away on May 30th, 2024.
With only experimental phase 1 clinical trials as treatment options, Adelia deserved better and we need to do better for all of the other children facing this monster of a disease. This year we will be dedicating all of our fundraising efforts to a new and desperately needed Brain Tumor Center that bridges Dana Farber and Boston Children's Hospital. This center is being spearheaded by Dr. Baird, arguably the best pediatric neurosurgeon in the world, and Dr. Filbin, one of the most brilliant and motivated researchers in this space. This center strives to develop personalized, precision medicine, where they can deliver rapid real-time molecular analysis to allow more effective treatments to start sooner. The center will also be developing support systems for families, a vital necessity and currently a missing piece in providing high quality continuum of care. Click here for more information about the Brain Tumor Center.
Join the Adelia the Wonder Girl Facebook page to read more about Adelia's courageous battle and to learn more about future events.
