Note from Alice: 10 Big Celiac Disease Moments of 2019
2019 has been a milestone year for Beyond Celiac and the entire celiac disease community. We are moving ever closer to effective treatments and a cure, and I have never seen greater engagement from our community in this critically important effort. Thanks to your support, we awarded our first research grants this year to three outstanding scientists. We expanded our 5K events to three cities; and we will be hosting events in five cities this coming year, allowing families impacted by celiac disease to come together, raise money for research and share their experiences.
I’m very proud of the work of the Beyond Celiac Scientific Advisory Council – composed of top celiac disease thought leaders from across the country – and of the new members of our Patient and Family Advisory Council. We also brought the powerful voice of opera star Arturo Chacón-Cruz to the battle against celiac disease. As our ambassador, Arturo is helping spread the word across the globe about the need for a stronger commitment to research. As our new tagline says, we go about all of this work together…together for a cure!
“This organization has helped me, a person with celiac disease, throughout most of my life. Now that I understand exactly how much Beyond Celiac has done to improve labeling, awareness, and celiac research, I feel truly grateful for all that has been done for me and others with celiac disease. You all should feel extremely proud that you’re helping to improve the lives of millions of people with celiac disease.”—Beyond Celiac Community Member
Here are my top 10 major moments in celiac disease from 2019:
- Beyond Celiac Funded $600,000 in Research Grants: Throughout the year, Beyond Celiac funded promising studies from top researchers to accelerate celiac disease treatments and a cure. Our grant-making program compels the NIH to increase their own funding of celiac disease research, which they have so far vastly underfunded. Read more about the science being studied with our grants here.
- New Guidelines Released for Infants at Risk for Celiac Disease: In April, the University of Chicago Celiac Disease Center released new guidelines for feeding babies at risk for celiac disease. The guidelines say that at-risk infants should eat less than 5 grams of gluten-containing food on average per day beginning when food is introduced to a baby at 4-to-6 months and continuing until the age of 2. In addition to limiting gluten-containing foods, the guidelines recommend that children in this “vulnerable population” should adopt a healthy, Mediterranean diet for the crucial first two years. Their hope is that by following these guidelines, less children at risk will end up developing celiac disease in the future.
- Gluten in Medicine Disclosure Act: Also in April, Representative Tim Ryan [D-OH] introduced H.R. 2074, the Gluten in Medicine Disclosure Act of 2019 to the congressional floor. If passed, the bill would amend the Federal Food, Drug, and Cosmetic Act to require gluten be labeled in all medications. Beyond Celiac worked with Rep. Ryan to spread the word and encourage the celiac community to rally behind the Gluten in Medicine Disclosure Act of 2019 by contacting their representatives and encouraging them to cosponsor this bill. Our own director of administration, Nancy Ginter, also traveled to D.C. to lobby for this important act. Currently, it has 44 co-sponsors—Rep. Ryan is hoping to get to 50!
- KnowCeliac.org Launched: In May, in honor of Celiac Awareness Month, Beyond Celiac and a coalition of other celiac disease organizations came together to highlight the seriousness of celiac disease. The creative “Know Celiac” campaign featured social media content, a pop-up store, and jarring digital videos that got people talking about celiac disease.
- Beyond Celiac Held our 3rd Research Symposium: This free event featured a panel of celiac disease experts sharing a glimpse of what it will take to get new treatments to patients. The key takeaway was the importance of the “you”, the patient voice in drug development.
- Launch of the Go Beyond Celiac App: In August we launched a first-of-its-kind mobile app to compliment Go Beyond Celiac, providing more convenience and opportunity for your participation. Go Beyond Celiac, which has enrolled nearly 5,000 members since its launch in 2017, is an online database where users can participate in research.
- Nexvax2 Trial Discontinued: Unfortunately, not all the news was good this year. This summer, after an FDA fast track and a seemingly promising start, a clinical trial investigating Nexvax2 was discontinued due to results that showed the vaccine to treat celiac disease did not provide protection from gluten exposure when compared to a placebo. But this setback was only one aspect of ongoing scientific discovery in the world of celiac disease.
- Nanoparticles Show Promise as a Treatment for Celiac Disease: For example, in October, news about a small Phase 2a study preliminarily presented at a European gastroenterology conference outlined how a nanoparticle treatment could potentially prevent gluten from triggering the immune reaction in celiac disease. Our Scientific Advisory Council member, Steve Miller, PhD, started this exciting work in his lab.
- Actor Casey Wilson Shares Her Son’s Celiac Disease Story: Just last month, in a powerful New York Times Parenting piece, the actor and comedian beautifully laid out the harrowing journey of her son’s diagnosis with celiac disease. The column helped to spread awareness of the disease and the serious side effects it can manifest in the undiagnosed.
- The Beyond Celiac Research Summit: The 2019 Beyond Celiac Research Summit brought together multidisciplinary stakeholders crucial to accomplishing the goal of developing new celiac disease treatments. Patients shared heartbreaking and alarming stories from before their diagnosis to tales of participating in clinical trials. Key researchers shared the latest in celiac disease research and FDA representatives gave a fascinating presentation. Information was shared, important connections were made, and action items were created for next steps to realizing real treatments and a cure for celiac disease.
What were some of your top celiac disease moments of 2019? Feel free to reply to the newsletter email with your thoughts! We will share the community’s responses on social in the coming days and weeks.
Here’s to even bigger news in 2020!
To Living Life Beyond Celiac,