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Letter from Alice: Celebrating Celiac Awareness Month and 20 Years of Stepping Up for Celiac
As we kick off Celiac Awareness Month, I want to reflect on the incredible accomplishments that Beyond Celiac and our community have achieved together over the last twenty years. For Beyond Celiac, 2023 marks two decades of serving the celiac disease and gluten-free community, and we couldn’t have done it without your support.
From our humble beginnings to receiving a grant from the National Institutes of Health, we’ve grown into a national organization that has significantly contributed to the community. Now we’re the premier patient advocacy and research organization for celiac disease! Let’s talk about some of the many achievements we’ve made over the last decade.
We launched the first-ever National Celiac Awareness Campaign in the early days with Heidi Collins of CNN as our spokeswoman. We also had partnerships with Quest Diagnostics and others, contributing to an increased rate of diagnosis from just 3% in 2003 to up to 50% today. We trained 900 medical professionals and estimated that we led to 6,000 new diagnoses. We also partnered with Anheuser-Busch to launch the first mainstream gluten-free product into the marketplace, Redbridge gluten-free beer.
We’ve made gluten-free food more available and affordable with our launch of the first-ever gluten-free expo, Appetite for Awareness. Beyond Celiac strives to be problem solvers who tackle the issues our community faces, and when we heard from you that this disease needed to be taken more seriously, we launched our Seriously Celiac PSA. We also heard from you that our family members were reluctant to get tested, so we created and launched Talk. Tell. Test., reaching more than 30,000 people in our community and helping them have a serious conversation about celiac disease with their family members. Our videos have had over 1 million impressions on YouTube. We continue to partner with Comcast/NBCUniversal in running a 30-second awareness PSA, made with real celiac disease patients, that has aired nearly a quarter of a million times in the last 3 years.
In addition, our website and social channels have attracted over 25 million visitors. Our YouTube channel alone has garnered 300,000 views, and our Celiac Straight Talk podcast has been downloaded 100,000 times. Moreover, tens of thousands of individuals have participated in our Town Halls, virtual conferences and webinars, seeking accurate and evidence-based information on managing the gluten-free diet amidst the proliferation of inaccuracies surrounding celiac disease and gluten sensitivity on the internet.
We also heard from researchers that they needed more patients to move clinical trials forward for treatments, so we started recruiting for and assisting trials. In the last few years, we have referred thousands of patients to trials across the US and seen a number of trials move on to the next phase of clinical research.
We saw that research for celiac disease was underfunded, so we jumped in and have so far committed $3.1 million for research grants to accelerate research for treatments and a cure.
And we’ve directly contributed to the collection of patient-reported data in the form of 14,693 completed research surveys in our Go Beyond Celiac patient registry. From this and other research, Beyond Celiac has had five abstracts/peer-reviewed studies published/accepted in 2022-2023 alone!
You said your voice wasn’t being heard, so we started collecting stories through our award-winning Voices of Celiac initiative. So far we’ve collected hundreds of diagnosis stories.
These are just a few of our accomplishments, and we couldn’t have done it without YOU and your support! The support of our community keeps us moving toward a cure.
Rest assured, we aren’t slowing down anytime soon. To celebrate 20 years of stepping up for celiac disease, we’re hosting our annual Step Beyond Celiac 5K this month, where we’ll come together virtually to raise awareness and funds for celiac disease research. But that’s not all! We’re also joining forces with other global celiac organizations to light up landmarks green for awareness in a joint Shine a Light on Celiac campaign. Notable landmarks being lit for celiac awareness on May 16 include Niagara Falls, the Quebec Olympic Stadium, and the Christ the Redeemer statue in Brazil! We hope you’ll join us in spreading awareness and getting involved in other ways too.
Additional ways you can help spread awareness are by sharing our social media posts, learning more about Celiac Awareness Month, signing up for our 5K, donating to research, helping light up a building with our Shine a Light campaign, sharing your diagnosis story, or joining a clinical trial. These are fantastic ways to support the celiac disease community and Beyond Celiac.
Thank you for your continued dedication to and passion for raising awareness and advancing research for celiac disease. Happy Celiac Awareness Month!
As always, TOGETHER for a cure,
—Alice Bast
