Alice Bast – Beyond Celiac CEO
The only non-profit for celiac disease with a science department, Beyond Celiac, is a hub for the celiac disease community, connecting them to researchers and providing support and education in patient-friendly language. We provide people with celiac disease the most relevant information about the latest in the field and encourage participation in research through our Go Beyond Celiac patient-centered platform and registry.
Beyond Celiac is propelling research for treatments beyond the gluten-free diet, and ultimately a cure for this serious genetic autoimmune disease. Located in Ambler, PA, Beyond Celiac is a national organization and the largest, most-trusted and most-relied upon patient advocacy non-profit for celiac disease education, awareness, diagnosis, and patient support.
Our Story
In 2003, Alice Bast founded Beyond Celiac, then called the National Foundation for Celiac Awareness. Because of her own devastating personal struggle caused by many years of misdiagnosis, Alice was compelled to use innovative approaches to address the critical needs in celiac disease: Faster diagnosis, greater awareness in the general public and with healthcare providers, and greater access to gluten-free food – the only available treatment for celiac disease thus far. Today, because of the work of Beyond Celiac, awareness of the disease is increasing, the diagnosis rate has increased 6-fold, and clearly labeled gluten-free foods are readily available nationwide.
In addition to raising awareness and driving diagnosis, Beyond Celiac is advancing research and accelerating the discovery of new treatments beyond the gluten-free diet, and ultimately, a cure.
Philadelphia Award Ceremony: Alice Bast with Ed Snider, 2011
Now, Beyond Celiac continues to identify key ways to represent patients and improve their lives. We’ve refined our mission. In addition to raising awareness and driving diagnosis, Beyond Celiac is advancing research and accelerating the discovery of new treatments beyond the gluten-free diet, and ultimately, a cure. Through our patient registry Go Beyond Celiac™, we collect celiac disease stories and information from our community and gather vital data that researchers need for critical clinical research.
For years, doctors thought that the gluten-free diet was enough. But research has shown that many people with celiac disease still remain sick even on the gluten-free diet, which itself is burdensome and reduces quality of life, especially when dining out, traveling and socializing. To improve the lives of people with celiac disease, numerous treatments are in the drug pipeline. And since celiac disease is the only autoimmune disease with a known trigger, researchers believe that unlocking treatments for celiac disease may lead to breakthroughs for all of autoimmunity. But successful research needs patient engagement. Beyond Celiac is uniquely situated to amplify the patient’s voice and has created the roadmap to accelerate finding a cure for celiac disease, including identifying and funding researchers to build the momentum.
Beyond Celiac has cultivated understanding and trust with our patient community and other key stakeholders. We are working to advance science on the verge of key discoveries by recruiting the right people, focused on the right issues, provided with the right resources. We want new treatments and a cure and won’t stop until those goals are achieved.
Milestones
- 2005 – Launched the first national celiac disease awareness campaign with spokesperson Heidi Collins, CNN news anchor
- 2007 – Created the first-ever gluten-free food expo: The Gluten-Free Cooking Spree/Appetite for Awareness
- 2008 – Launched restaurant training program for safe gluten-free food service: GREAT Kitchens
- 2011 – Alice Bast received the Philadelphia Award for bringing gluten-free food to the mainstream so that people with celiac disease have greater access to their only treatment
- 2013 – The FDA established rules to regulate consistent and accurate gluten-free labeling
- 2016 – Launched the patient platform and registry Go Beyond Celiac, an innovative tool in ensuring patient engagement in celiac disease research
- 2017 – Alice Bast received the Philadelphia Magazine Trailblazer Award for over a decade of service to people with celiac disease
- 2017 – Launched an annual celiac disease research symposium, convening leaders in the field for groundbreaking discussion for treatments and a cure
- 2018 – Established the Beyond Celiac researcher grant award program to accelerate research for treatments and a cure for celiac disease
