The most powerful tools we have for influencing Congress and creating change are the voices of our nationwide network of celiac disease Patient Advocates. Last week, Celiac Disease Foundation State Advocacy Ambassadors from four states met virtually with the staff of their Members of Congress to advocate for expanded National Institutes of Health (NIH) funding for celiac disease research in Fiscal Year 2023, and for including celiac disease in the Congressionally Directed Medical Research Programs.  

Celiac Disease Foundation State Advocacy Ambassadors met with the Congressional staff of:  

Congresswoman Betty McCollum (D-MN), Chair of the Congressional Celiac Caucus, House Appropriations Committee
Congressman Tim Ryan (D-OH), House Appropriations Committee
Senator Roy Blunt (R-MO), Ranking Member of the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education
Senator Richard Blumenthal (D-CT), Armed Services, Commerce, Judiciary and Veteran’s Affairs Committees

We would like to express our deepest appreciation to the Patient Advocates who took the time to meet with their Members of Congress. These efforts directly help to improve the quality of life for all those affected by celiac disease.  

Amanda Hoffman, Constituent of Senator Blunt
Johnna Wright Perry, Constituent of Senator Blunt
Jordanna Simmons, Constituent of Congresswoman McCollum
Karen Jones, Constituent of Congresswoman McCollum
Adam Schrag, Constituent of Congresswoman McCollum
Kelly Maynard, Constituent of Congresswoman McCollum
Beth Chatfield, Constituent of Senator Blumenthal
Paula Moore, Constituent of Senator Blumenthal
Kelsey Smith, Advocacy Council Member
Josh Denney, Advocacy Council Member 

The Celiac Disease Foundation also applauds the passage of the federal government’s Fiscal Year 2022 spending bill, which includes language directing the National Institute of Allergy and Infectious Diseases (NIAID) to support new research on celiac disease, to better coordinate existing research, and to focus new research on diagnosing and treating celiac disease. We extend our sincerest thanks to Congress, the President, and our Celiac Disease Foundation State Advocacy Ambassadors for working with us to secure this language to support celiac disease research efforts. The budget language reads:  

Celiac Disease.—The Committee encourages NIH to devote focused research to the study of celiac disease, including the autoimmune causation underpinning the affliction. Today, the only known treatment for this disease is a gluten-free diet; however, recent public and private sector research confirms that such a treatment is insufficient for many who suffer from celiac disease. Therefore, the Committee urges NIAID to support new research on celiac disease, to better coordinate existing research, and to focus new research towards diagnosing and effectively treating this condition. The Committee also strongly encourages NIH to establish a Research Condition, Disease Categorization (RCDC) for celiac disease and a Notice of Special Interest to spur additional research.  

We are deeply grateful to all those who have supported our work and to our celiac community for everything we have accomplished, and will continue to accomplish, together.  

Watch Congressional Celiac Disease Patient Advocate Testimonies here.  

Interested in becoming a Celiac Disease Foundation State Advocacy Ambassador? Visit iAdvocate to learn more and become a part of our nationwide network of celiac advocates.