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Rallying for Research: Celiac Disease Patients Get a Voice on Capitol Hill

Celiac disease advocates head to Capitol Hill to push for research for the autoimmune disease and digestive conditions.

By Lindsey Goebel, Beyond Celiac Volunteer and Business Advisory Council Member

Lindsey Goebel and DaughterAs a patient with celiac disease, diagnosed before “gluten-free” became a buzzword, I’ve been committed to raising awareness about the condition through volunteering my time and taking a stance on social media. A few months ago, I became the mother of a celiac disease patient when doctors confirmed my two-year old also had the autoimmune condition. My first reaction was to worry about if my daughter would feel left out at birthday parties or summer camp. But, very quickly my mind raced to celiac disease’s many connections to other serious conditions including other autoimmune diseases and even certain cancers. That’s when I resolved to really get involved.  

Campaigning for Meaningful Research

This week, as a volunteer for Beyond Celiac, I had the opportunity to join the digestive disease community on Capitol Hill to advocate for biomedical research, healthcare accessibility and prevention-focused programs. Beyond Celiac is a member of the Digestive Disease National Coalition (DDNC), an advocacy organization focused on improving public policy and increasing public awareness with respect to diseases of the digestive system. Partnering with this group helped us amplify our voice and rally for federal funding to support celiac disease and other digestive diseases, which impact nearly 70 million Americans.

Capitol Hill

With more than 40 patient, industry and professional groups, we marched to Capitol Hill to speak with legislators about creating meaningful change. Congress is currently working on FY2017 and FY2018 budgets, which determine funding allocations for entities such as the National Institute of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Therefore, our Hill visit was well timed to create an impact with the hope of increasing research funding for digestive diseases. 

We met with legislative aides in both the Senate and House of Representatives. When I spoke about my daughter’s celiac diagnosis, most staffers nodded knowingly before I even defined the disease. This alone felt like progress. When I told them how more than three million people have celiac disease, but 83 percent are undiagnosed, eyes opened wide, and it was reassuring to see many take notes.

DDNC Members and Legislative Staff
DDNC members met with legislative staff from
Senator Ben Cardin’s (D-Maryland) office.

Constituent voices count, maybe even more than we think. When congressional staff were asked in a recent report what advocacy factors impact an “undecided” lawmaker, more than 90 percent said in-person visits have some or a lot of influence. This is all the ammunition I need to keep calling on my legislators, I hope you’ll do the same.

Our Voice Will Make a Difference

Beyond Celiac is focused on delivering new treatments and ultimately a cure. The only way to get there is more research. People living with celiac disease are the key to making progress in research. Beyond Celiac connects patients with researchers so they can work to address your most pressing needs. Learn more about the nonprofit’s role in research.

If you are a member of the celiac disease community and want to move the needle on access to safe foods and treatments, and ultimately find a cure, stay up-to-date through the Beyond Celiac Research Opt-In.

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