Beyond Celiac was founded in 2003 as the National Foundation for Celiac Awareness (NFCA). Founder and President Alice Bast envisioned a world where people with celiac disease could be quickly diagnosed, eat safely and live their lives to the fullest. Today, Alice leads Beyond Celiac in a direction no other patient advocacy group is heading: down a pathway to a cure.
More about Alice and the Seeding of Beyond Celiac:
Early in its history, Beyond Celiac stepped into the field of advocacy when it learned that there were not any celiac disease organizations actively involved in addressing the risk of potential gluten exposure through medications.
As with many advocacy initiatives, this work began with a personal story when former Beyond Celiac Spokesperson Heidi Collins was unable to fill a prescription one Christmas Eve for her son with celiac disease because the potential for gluten in the medication could not be determined.
Since then, Beyond Celiac has expanded its advocacy initiatives and focused on advocating for access to high quality healthcare, along with gluten-free food and drug safety standards by providing training and resources to the foodservice industry and regulatory agencies.
Currently, Beyond Celiac focuses our advocacy efforts on maximizing investment of public funds in research and public policy supporting these desired outcomes.
Beyond Celiac uses a variety of approaches to achieve our mission:
- Reducing the Time to Diagnosis
- Helping the Community to Live Better, Longer
- Accelerating Research and Forging the Pathways to a Cure
- Beyond Celiac in National Media
Below are some highlights and examples of how Beyond Celiac advocates for the community.
Download a timeline of the work of Beyond Celiac since 2003.
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Beyond Celiac Advocacy & Research Efforts
Partnering with Janssen (Johnson & Johnson) to Support Critical Celiac Disease Research
In 2021, Beyond Celiac announced a two-year joint research grant program with Janssen Research & Development, LLC (Janssen) through its World Without Disease Accelerator group. Through a commitment of up to $1 million in funds and services, Beyond Celiac and Janssen will co-fund research focusing on risk detection, prevention, interception and cure of celiac disease. Emphasis will be placed on gaining an increased understanding of areas such as the gut microbiome, induction of immune tolerance and biomarkers of risk and progression.
Recruiting for Clinical Trials
In 2020, Beyond Celiac was chosen by 9 Meters Biopharma, Inc. (Nasdaq: NMTR) as the exclusive patient organization to recruit for the first-ever Phase 3-stage clinical trial therapeutic for treatment of celiac disease. Beyond Celiac will use its unrivaled connection to the celiac disease community and its powerful online patient database to recruit participants for the study of larazotide acetate, which aims to address leaky gut in celiac disease.
Involvement with the Digestive Disease National Coalition (DDNC)
Beyond Celiac is a member of the Digestive Disease National Coalition (DDNC), an advocacy organization focused on improving public policy related to digestive diseases and increasing public awareness of and government funding for digestive diseases.
Engaging Youth with Our Summer Intern Council
In 2020, Beyond Celiac engaged a group of group college interns for the summer to assist with market research and designing and implementing a national volunteer network. Working remotely and representing their region, members of this Summer Intern Council worked both independently and collaboratively on projects designed to drive the organization forward.
Participation in the U.S. Food and Drug Administration (FDA) Patient Representative Program
In 2012, Alice Bast, Beyond Celiac President and CEO and Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives were chosen to serve as FDA Patient Representatives for celiac disease as part of FDA’s program to ensure that patients have a voice in its regulatory decision-making.
Addressing Challenges for U.S. Gluten-Free College Students
In 2012, Beyond Celiac continued its work in the college and university setting by surveying nearly 1,000 U.S. gluten-free college students to strengthen our ability to advocate for improved training for college foodservice operator. This survey revealed a continued and pervasive lack of awareness and accommodation for students with gluten-related disorders.
Drug Information Association (DIA) Participation
Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives was a 2013 Patient Advocate Fellow for the Drug Information Association (DIA).
Education of Pharmacists and the Labeling of Gluten in Medications
Beyond Celiac works with the FDA and private organizations and corporations to meet our shared goal: safe pharmaceutical care for those who must maintain a medically necessary gluten-free diet.
Gluten-Free Food Labeling
Beyond Celiac actively worked to secure regulations that define the requirements for food companies manufacturing packaged products that make a gluten-free label claim.
Working with Celiac Centers of Excellence: Providing Data to Advance a Better Understanding of Celiac Disease
Beyond Celiac collects information and data from patients and their families about their concerns, attitudes and health outcomes, partnering with experts to advance a better understanding of the disease and how to manage it.
Speaking Engagements and Industry Presentations
Beyond Celiac influences decision makers that impact all aspects of life to advance the interests of the celiac disease community.
Beyond Celiac in National Media
Beyond Celiac engages in press outreach and fields press inquiries from national media and industry reporters looking for expert input.