June 2022

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Letter from Alice: A Summer Beyond Celiac

What an awe-inspiring Celiac Awareness Month! We are truly heartened by the incredible level of engagement we had throughout the month of May. Whether it was lacing up your sneakers for our Step Beyond Celiac 5K, sharing our posts on social media or lighting up Niagara Falls green, thousands of you contributed to the work that will accelerate research for treatments and a cure.

To recap, here’s what happened in Celiac Awareness Month 2022:

• 711 people participated in Step Beyond Celiac 5K, raising nearly $80,000
• Two celebrities, actress Annaleigh Ashford and television host Marc Summers, stepped up for Step Beyond Celiac on Instagram
• Findings from the Beyond Celiac-led first-ever national celiac disease survey were released, and the results were shocking!
• 50,000 participated with us on social media to help raise awareness for celiac disease
• 10 international celiac disease organizations came together to Shine a Light on Celiac by lighting up notable buildings and landmarks green for celiac disease, including the Helmsley Building in New York
• We hosted a Town Hall featuring Dan Leffler, MD, and Doug Jacobstein, MD, about the future of celiac disease treatments. You can watch it back on our website
• In conjunction with the Society for the Study of Celiac Disease, we announced that Arnold Han, MD, would receive an $180,000 Early Career Research Award to study the impact of T-cells in celiac disease
• Beyond Celiac was featured in dozens of news stories, and several board members, ambassadors and I were featured in TV news interviews
• Beyond Celiac colleague Alessio Fasano, MD, who recently attended and spoke at our Research Summit, was featured in a New York Times article, and he concurred that we could have treatments before 2030 — the target Beyond Celiac has set as we raise money to accelerate research to make it happen.

None of this would have been possible without our amazing community, and we’re just getting the summer started!

This year, we have launched an ambitious initiative, Summer Beyond Celiac, to raise $180,000 for research to create a world Beyond Celiac. Already it is being fueled by community events, large and small—in fact, you can reach into your community and host a Summer Beyond Celiac Event in any manner you choose! While you gather with family and friends, you’ll not only increase awareness about celiac disease, but raise funds for critical celiac disease research.

Here are just a few of the events held by community members, volunteers and Reach Beyond Celiac Ambassadors:

• Ambassador Olivia Quinby hosted a gluten-free trivia and a gluten-free scavenger hunt in her college’s dining hall to raise awareness and collect donations.
• Volunteers in Boston hosted a fundraising house party.
• Ambassador Lucia Jayde Ochoa and son Jayden are hosting a Painting for a Cure event.
• Volunteer Alia Scelp is having a booth at her local farmer’s market to sell gluten-free treats to benefit Beyond Celiac.
• Ambassador Hayden Bishop held a month-long raffle for jiu-jitsu classes with the proceeds benefiting Beyond Celiac.
• Volunteers Cara and Jessica are leading Cara’s elementary school in a fundraising walk.

We invite you to gather with your community and raise awareness through a luncheon, dinner party, bingo game, watch party, or anything else you can think of!

With your help, we are accelerating solutions so that we can live our lives to the fullest, free from worry about every bite. Together, we can create a world Beyond Celiac!

Please contact Valerie Kraft to learn more about setting up a fundraising event at [email protected] or 267-419-2115.

Together for a cure,
-Alice Bast

Research News

Potential celiac disease drug that breaks down gluten protects against damage to the small intestine, study results show
A drug designed to break gluten into harmless fragments successfully protected against damage of the small intestine in celiac disease patients, according to results of a study presented recently at Digestive Disease Week (DDW).

Potential new drug for celiac disease targets pathway in the liver to end harmful response to gluten
Early results of ACeD study (Assessment of KAN-101 in Celiac Disease), show that KAN-101 induced T-cell tolerance of gliadin, the harmful component of gluten, in study participants after they were given a gluten challenge.

Racial and ethnic healthcare disparities in celiac disease diagnosis explored in Beyond Celiac presentation at DDW
Someone’s race and ethnicity and what part of the United States they live in can affect whether they are diagnosed with celiac disease, suggests a preliminary study Beyond Celiac presented Tuesday at Digestive Disease Week.

It is common to feel more sensitive to gluten exposure after a celiac disease diagnosis
If you feel like you get sicker when exposed to gluten ever since your celiac disease diagnosis and the start of the gluten-free diet, you are not alone according to results of a study presented at Digestive Disease Week (DDW).