The Life Raft Group led a powerful advocacy effort during Rare Disease Week to ensure GIST patients were not forgotten in the FY25 spending bill. Our social media campaign mobilized patients, caregivers, and supporters to contact their legislators and demand full funding for the NIH, the largest public funder of biomedical research. By uniting our voices, we sent a clear message to Congress: Rare disease research and patient care is a non-partisan issue that must be fully supported in 2025.
The U.S. Congress ended up passing a Continuing Resolution to fund the federal government through September 30, 2025, avoiding a shutdown that would have occurred after the previous CR expired on March 14, 2025. While we are happy that funding didn’t decrease, rising research costs (e.g., equipment, personnel, and inflation) could strain operational capacity. Therefore, our community must continue urging legislators to boost NIH funding while also supporting cancer research through donations, if financially able. We will continue to update you on this topic throughout the year.
GIST Advocate Martina Will shared her thoughts on the ongoing post-election research funding crisis:
“Please continue to support a robust federal budget that supports all of us, including those of us with rare and life-threatening diseases. We need to support programs like Medicaid, Medicare and the institutions like the National Institutes of Health, that offer life-saving research and clinical work to help us unicorns.
I had surgery a few weeks ago at the NIH for my rare GIST cancer mutation, and as I recuperate at home in Denver and read the headlines, I fear for those who are praying for surgical and other interventions that ordinary insurance won’t cover due to their “experimental” nature or prescription drugs that aren’t covered because no one does studies on drug efficacy for patients who are part of a small (500 new cases a year) patient pool.”
