The Celiac Disease Foundation and a powerful, inspired team of advocates from across the country traveled last week to Washington, D.C., meeting with more than 30 bipartisan congressional offices to press for continued research funding at the National Institutes of Health (NIH) and the Department of Defense (DOD), and asking their Representatives to join the Congressional Celiac Disease Caucus as part of the Foundation’s 2025 Advocacy Summit and Hill Day. The Foundation also presented Senator Richard Blumenthal with the 2025 Celiac Disease Policy Leadership Award for his continued commitment to advancing policies that benefit our patient community.
Many lawmakers our lived experience experts met with are members of either the Senate or the House Appropriations Committees – which oversee federal funding for the research needed to advance celiac disease diagnosis, treatments, and a cure – programs including the National Institutes of Health (NIH), Department of Defense (DOD), the U.S. Food and Drug Administration (FDA), and the Centers for Disease Control and Prevention (CDC).
This work builds on our strong, successful collaboration with our congressional champions and advocates which secured two critical wins for Fiscal Year 2024: and the inclusion of celiac disease—for the second year in a row—in the highly coveted Department of Defense (DOD) Peer Reviewed Medical Research Program.
Representing 14 states—Massachusetts, New York, Kansas, Louisiana, Maryland, Virginia, Maine, Oklahoma, California, Georgia, Minnesota, Washington, Connecticut, and Pennsylvania—our advocates turned their personal journeys with celiac disease into compelling advocacy.
This advocacy brings tremendous benefit. From the Celiac Disease Congressional Caucus founded under the leadership of Congresswoman Betty McCollum, to the successful requests for funding at both the NIH and the DOD, this work with our advocates and champions is improving the quality of life for our celiac disease community.
Learning to Be Advocates
Before stepping into meetings with lawmakers, all participants gathered to learn about the legislative process and how to share their stories effectively. They connected with each other, sharing their experiences of living with celiac disease, the challenges of accessing safe food, and the difficulties of affording necessary medical care. Together, our youth advocates participated in a special session to draft their own proposed celiac disease laws, gaining a firsthand understanding of how policy is shaped and the power of their voices in driving change.
Senator Richard Blumenthal (CT) receives the 2025 Celiac Disease Foundation Policy Leadership Award
Taking the Message to Capitol Hill
Armed with their personal stories and newfound advocacy skills, the advocates met with senators and representatives to champion three key priorities:
- Increased federal funding for celiac disease research through the National Institutes of Health (NIH) and the Department of Defense (DOD).
- Expanding the House Celiac Disease Caucus, urging more congressional leaders to join the effort in advancing research, education, and policy changes for those living with celiac disease.
- Insurance coverage for medical nutrition therapy, ensuring that dietitian visits are covered to help patients properly manage their gluten-free diet.
Each meeting was a powerful reminder that advocacy can start at a young age. Legislators and their health staff listened intently as the kids and adults shared their struggles—describing what it’s like to get sick from a gluten exposure, the anxiety of eating safely outside the home, and the urgent need for better treatments and, one day, a cure.
Building Friendships and a Lasting Movement
Beyond the meetings, Hill Day was an opportunity to build lasting friendships. Between exploring D.C. monuments and taking in the sights of the nation’s capital, these advocates bonded over their shared experiences, realizing they were part of something bigger than their own diagnosis. The event wasn’t just about influencing policy; it was about community, empowerment, and proving that change is possible when people come together with a common purpose.
Looking Ahead
The impact of the 2025 Advocacy Summit and Hill Day will be felt long after the last meeting ended. With more voices calling for action than ever before, momentum is building toward a future where celiac disease is better understood, better funded, and ultimately, cured.
Our work on Capitol Hill continues to expand – and we need your voice. Sharing our stories and raising our collective voices will serve to strengthen efforts to build awareness and fight for resources that will advance diagnosis and treatment options for celiac disease.
Please become a Celiac Disease Foundation Policy Advocate today.
