Last week individuals from across the country, including a group of passionate young advocates, traveled to Washington, D.C., to take part in the Celiac Disease Foundation’s 2025 Advocacy Summit and Hill Day. Representing 14 states—Massachusetts, New York, Kansas, Louisiana, Maryland, Virginia, Maine, Oklahoma, California, Georgia, Minnesota, Washington, Connecticut, and Pennsylvania—this energetic, inspiring group turned their personal journeys with celiac disease into advocacy on Capitol Hill.
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.
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.