The Beginning of Beyond Celiac
Beyond Celiac President & CEO Alice Bast
Beyond Celiac was founded in 2003 as the National Foundation for Celiac Awareness (NFCA). Alice Bast established NFCA as the first patient advocacy group dedicated to improving the environment in order to drive diagnosis from a mere 3% and enable access to the only treatment for celiac disease: gluten-free food.
Alice developed her vision based on her own devastating personal experience of delivering a stillbirth, suffering multiple miscarriages and giving birth to a baby born at only 3 pounds as a result of undiagnosed celiac disease. With a passion to prevent others from suffering as she had, the goal was to create a leading organization that would initially spread awareness to drive diagnosis of celiac disease on a national level and, ultimately, raise funds for research to better understand the causes, mechanisms and treatment of celiac disease. Click here to learn more about Alice's personal story.
Addressing the Needs of People Living with Celiac Disease
A formal needs assessment found that the celiac disease community had support once diagnosed through existing organizations, but there was a need to raise awareness on a national scale in order to drive diagnosis of the 97% who remained undiagnosed or misdiagnosed. NFCA then became the first to actively promote diagnosis of celiac disease. Alice organized a distinguished Scientific/Medical Advisory Council, an essential step in providing accurate and evidence-based information to the celiac disease community and a grant from the National Institutes of Health (NIH) enabled NFCA to develop a patient and medical professional educational program for celiac disease entitled Novel Educational Aids for Celiac Disease, on which she served as the Principal Investigator.
NFCA’s national public awareness campaign was aimed at the general public and positioned NFCA as one of the nation’s best resources for information for people both diagnosed and undiagnosed with celiac disease, their loved ones and their healthcare providers. The campaign featured NFCA spokesperson and former CNN Anchor Heidi Collins, which was an instrumental step towards garnering the country’s attention on celiac disease by providing access to both CNN and CBS. As the campaign’s centerpiece, NFCA introduced Do I Have Celiac?, a checklist alerting the public to the signs and symptoms of celiac disease that could be shared with their physicians.
In 2007, NFCA launched celiaccentral.org, a comprehensive website full of free, evidence-based resources to help the celiac disease community navigate their diagnosis. Today, celiaccentral.org has morphed into BeyondCeliac.org, which contains even more of the same trusted information provided by the previous site.
Increasing Access to Safe Gluten-Free Food
Shortly after this campaign’s launch, NFCA sought additional government funding to continue its diagnosis efforts when the Department of Health and Human Services identified a new obstacle: even if diagnosed, the average American could not access or afford gluten-free products. As a result, NFCA revised its mission to include improving the quality of life of the celiac disease community and repositioned its efforts to improve the supply and demand of gluten-free products by strategically leveraging the power of the food industry. Partnering with national companies such as Walmart and Whole Foods Market, NFCA worked to bring affordable gluten-free products to the shelves of mainstream grocery stores. But, NFCA soon learned of another obstacle to achieving an improved quality of life: the celiac disease community remained unable to safely eat outside of their homes. In 2008, NFCA launched the GREAT Kitchens program to address this need by educating the foodservice industry through a comprehensive online curriculum modeled on the National Restaurant Association’s ServSafe program.
Engaging the Community
The organization solidified its position in engaging the community by utilizing the internet, with a special focus on social media, to connect with patients and their caregivers and understand their day-to-day needs. At the same time, we set out to understand how patients, healthcare providers and the media were utilizing our resources and how we could effectively drive diagnosis, empower patients to better manage the gluten-free diet and their overall health, and to counter the mythology of the gluten-free diet surfacing in the public eye.
In 2013, at its 10-year anniversary, NFCA’s leadership began to look at our distinct role in providing innovative and engaging experiences for patients and inspiring hope for a better future. New evidence suggested that the gluten-free diet is not the perfect solution that we once thought it was. Patients were continuing to demonstrate compromised health and negative psycho-social impact despite their diligence in trying to adhere to the gluten-free diet. A pharmaceutical therapy was also in sight with several major drug companies now taking an interest.
In an effort to move from awareness to action to forge pathways to a cure for celiac disease, NFCA hosted a Research Summit in 2015 designed to create an aggressive research agenda for the organization.
By this time, the National Foundation for Celiac Awareness had outgrown our name and initial mission and, in a bold effort, decided to rename the organization to reflect our current priorities and respond to the needs of each person with celiac disease to be educated and empowered to move beyond their disease. Beyond Celiac was launched in December 2015 to embody a brighter future for our community and stimulate scientific innovation.