National Foundation For Celiac Awareness

MISSION STATEMENT: THE NATIONAL FOUNDATION FOR CELIAC AWARENESS, DOING BUSINESS AS BEYOND CELIAC, UNITES WITH PATIENTS AND PARTNERS TO DRIVE DIAGNOSIS, ADVANCE RESEARCH AND ACCELERATE THE DISCOVERY OF NEW TREATMENTS AND A CURE. VISION STATEMENT: A WORLD IN WHICH PEOPLE WITH CELIAC DISEASE CAN LIVE HEALTHY LIVES, FREE FROM SOCIAL STIGMA AND FEAR OF GLUTEN EXPOSURE - A WORLD BEYOND CELIAC. DIVERSITY, EQUITY AND INCLUSION (DEI) MISSION BEYOND CELIAC FOSTERS A SENSE OF BELONGING BY ELEVATING UNDERREPRESENTED VOICES AS WE WORK TOGETHER FOR A CURE. WE SEEK TO BE A COMMUNITY THAT WELCOMES DIVERSE PERSPECTIVES AND PROVIDES MEANINGFUL OPPORTUNITIES TO EMPOWER MARGINALIZED POPULATIONS. DIVERSITY, EQUITY AND INCLUSION (DEI) VISION BEYOND CELIAC BELIEVES IN A WORLD WHERE WE ALL CAN LIVE HEALTHY LIVES FREE FROM BIAS AND BARRIERS. ACROSS OUR WORK, WE MUST ENGAGE DIVERSE PERSPECTIVES AND PROMOTE EQUITY IN OUR COMMUNITY TO REALIZE OUR VISION OF A WORLD BEYOND CELIAC. BEYOND CELIAC OVERVIEW SINCE 2003,

RESEARCH IN THE FIELD OF CELIAC DISEASE AND RELATED DISORDERS BEYOND CELIAC OFFERS GRANTS TO MEMBERS OF THE RESEARCH AND MEDICAL COMMUNITIES WHO ARE ADVANCING CELIAC DISEASE RESEARCH. USING A PATIENT-CENTERED APPROACH AND WORKING WITH THE BEYOND CELIAC SCIENTIFIC ADVISORY BOARD, CELIAC DISEASE SCIENTISTS ARE MAKING DISCOVERIES ABOUT CELIAC DISEASE WITH HELP FROM BEYOND CELIAC GRANTS. BEYOND CELIAC AWARDS MAJOR CELIAC DISEASE RESEARCH GRANTS THAT WILL ACCELERATE RESEARCH IN CELIAC DISEASE, NON-CELIAC GLUTEN SENSITIVITY ("GLUTEN SENSITIVITY") AND ASSOCIATED DISORDERS TO ADVANCE TREATMENTS BEYOND THE GLUTEN-FREE DIET AND, ONE DAY, A CURE. RECENT MAJOR GRANT AWARDS: PAUL KLENERMAN, PHD, A PROFESSOR OF GASTROENTEROLOGY AT THE UNIVERSITY OF OXFORD, OXFORD, ENGLAND, RECEIVED THE BEYOND CELIAC ESTABLISHED INVESTIGATOR AWARD. HE IS STUDYING KILLER T-CELLS THAT CAUSE THE ACTUAL TISSUE DAMAGE IN CELIAC DISEASE. JOCELYN SILVESTER, MD, DIRECTOR OF RESEARCH OF THE CELIAC DISEASE PROGRAM AT BOSTON CHILDREN'S HOSPITAL, IS THE RECIPIENT OF THE BEYOND CELIAC PILOT AND FEASIBILITY GRANT. HER STUDY IS USING RNA SEQUENCING OF A SERIES OF BIOPSIES COLLECTED DURING AN EARLIER GLUTEN-CHALLENGE STUDY. SILVESTER IS THEN CHECKING THE ACCURACY OF THE SEQUENCING METHOD ON THE BIOPSIES PREVIOUSLY TAKEN FOR DIAGNOSIS AND FOLLOW-UP ON ANOTHER GROUP OF PATIENTS. ARNOLD HAN, MD, PHD, OF COLUMBIA UNIVERSITY, WAS GRANTED THE BEYOND CELIAC-SOCIETY FOR THE STUDY OF CELIAC DISEASE (SSCD) EARLY CAREER RESEARCH AWARD. HE IS INVESTIGATING THE ROLE OF CD8 T-CELLS TO ESTABLISH ANTIGEN SPECIFICTY. THE STUDY WILL ALSO INVESTIGATE CELIAC DISEASE MECHANISMS THROUGH AN INVITRO MODEL, CALLED AN ORGANOID. THIS RESEARCH IS A JOINT VENTURE THAT AIMS TO CORRECT A SIGNIFICANT GAP IN THE GASTROINTESTINAL AND AUTOIMMUNE DISEASE RESEARCH PORTFOLIO. NIGEL HOGGARD, MD AND IAIN CROALL, PHD, OF THE UNIVERSITY OF SHEFFIELD, UK, RECEIVED A BEYOND CELIAC ESTABLISHED INVESTIGATOR AWARD TO RESEARCH NEUROPATHOLOGY OF CELIAC DISEASE AND GLUTEN-RELATED DISORDERS. NEUROPSYCHOLOGICAL IMPAIRMENT IN PEOPLE WITH CELIAC DISEASE CAN BE AS OR MORE DEBILITATING THAN THEIR GASTROINTESTINAL SYMPTOMS, AND IT HAS BEEN OVERLOOKED. THEIR STUDY IS FOCUSING ON HOW EFFECTIVELY THE GLUTEN-FREE DIET TREATS THESE NEUROLOGICAL PROBLEMS AND WILL FURTHER INVESTIGATE LONG-TERM EFFECTS ON COGNITIVE FUNCTION, SEVERITY OF DEPRESSION AND ANXIETY SYMPTOMS AND OVERALL QUALITY OF LIFE. RESEARCH PARTNERSHIPS: BEYOND CELIAC AND THE NATIONAL MINORITY QUALITY FORUM (NMQF) HAVE PARTNERED TO TARGET INEQUITIES IN CELIAC DISEASE DIAGNOSIS, TREATMENT THIS UNIQUE PARTNERSHIP FOCUSES ON THE DISPARITY IN DIAGNOSIS OF CELIAC DISEASE AND IS BUILDING A NEW EQUITABLE PATH FORWARD BY INVESTIGATING THE EXTENT OF UNDIAGNOSED CELIAC DISEASE, PARTICULARLY AMONG NON-CAUCASIANS. MEDICARE AND MEDICAID DATA IS BEING USED TO MAP DIAGNOSED CELIAC DISEASE ACROSS THE UNITED STATES AND TO IDENTIFY POTENTIALLY MISSED AND MISDIAGNOSIS OF THE DISEASE, PARTICULARLY AMONG UNDERSERVED POPULATIONS. BEYOND CELIAC HAS PARTNERED WITH JANSSEN PHARMACEUTICALS TO SUPPORT CRITICAL CELIAC DISEASE RESEARCH. BEYOND CELIAC IS PROUD TO ANNOUNCE A COMMITMENT OF UP TO 1 MILLION IN FUNDS AND SERVICES OVER THREE YEARS. BEYOND CELIAC AND JANSSEN WILL CO-FUND MULTIPLE GRANTS SUPPORTING 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.

GO BEYOND CELIAC: WE CAN, WE WILL GO BEYOND CELIAC, A MAJOR BEYOND CELIAC PROGRAM, IS AN ONLINE CELIAC DISEASE PATIENT REGISTRY AND APP THAT COLLECTS DATA TO ACCELERATE RESEARCH FOR CELIAC DISEASE. THIS IS A PLACE WHERE PATIENTS CAN ACTIVELY PARTICIPATE IN RESEARCH BY SHARING THEIR STORIES AND EXPERIENCES TO HELP IMPROVE DIAGNOSIS AND FURTHER RESEARCH TOWARD TREATMENTS AND A CURE FOR THIS SERIOUS AUTOIMMUNE DISEASE. THIS HELPS RESEARCHERS AND HEALTHCARE PROFESSIONALS TO HAVE A BETTER UNDERSTANDING OF HOW CELIAC DISEASE DEVELOPS. PARTICIPANTS ALSO CAN LEARN ABOUT HOW THEY CAN JOIN RESEARCH STUDIES AND STAY UP TO DATE ON THE LATEST IN CELIAC DISEASE SCIENCE. GO BEYOND CELIAC COLLECTS SELF-REPORTED DATA TO IMPROVE UNDERSTANDING OF CELIAC DISEASE. AS A MEMBER OF THE GO BEYOND CELIAC COMMUNITY, PARTICIPANTS WILL BE ABLE TO ADD THEIR EXPERIENCES TO THE LARGER CELIAC DISEASE PICTURE AND SEE HOW IT COMPARES TO OTHERS. PARTICIPANTS CAN TRACK THEIR HEALTH AND STORE THEIR CELIAC DISEASE-RELATED DATA AND HISTORY IN ONE SAFE PLACE. GO BEYOND CELIAC COLLECTS AND ANALYZES COMPREHENSIVE DATA ON THE BURDEN OF CELIAC DISEASE AND GLUTEN SENSITIVITY. WITH THIS INFORMATION, BEYOND CELIAC CAN INCREASE AWARENESS AND MAKE A COMPELLING CASE FOR LARGER INVESTMENTS FROM GOVERNMENT AGENCIES, PHARMACEUTICAL COMPANIES, BIOTECH AND MORE TO ADVANCE RESEARCH. THROUGH GO BEYOND CELIAC, PARTICIPANTS CAN GET INFORMATION ON THE LATEST IN CLINICAL TRIALS FOR CELIAC DISEASE, INCLUDING WHICH TRIALS ARE CURRENTLY RECRUITING AND HOW PATIENTS CAN GET INVOLVED. CURRENTLY, OVER 8,200 PARTICIPANTS HAVE JOINED GO BEYOND CELIAC TO SHARE THEIR SELF-REPORTED DATA TO IMPROVE UNDERSTANDING OF CELIAC DISEASE. THIS WILL HELP INCREASE DIAGNOSIS AND FURTHER RESEARCH TOWARD NEW TREATMENTS AND A CURE.

BEYOND CELIAC RESEARCH SUMMITS BEYOND CELIAC HAS HOSTED RESEARCH SUMMITS BECAUSE SO MANY NEEDS REMAIN UNMET FOR THE CELIAC DISEASE COMMUNITY. BEYOND CELIAC HAS PRODUCED BEYOND CELIAC RESEARCH SUMMITS SINCE 2018, INCLUDING A SUMMIT IN 2022 ENTITLED THE EVOLVING LANDSCAPE OF CELIAC DISEASE BRINGING TOGETHER STAKEHOLDERS CRUCIAL TO ACCOMPLISHING THE GOAL OF DEVELOPING NEW CELIAC DISEASE TREATMENTS. THE 2022 BEYOND CELIAC RESEARCH SUMMIT WAS A CRITICAL NEXT STEP IN WORKING TOGETHER TO DELIVER TREATMENT OPTIONS TO EVERYONE WHO WANTS AND NEEDS THEM. THESE RESEARCH SUMMITS BRING TOGETHER CLINICIAN SCIENTISTS, PATIENTS, ENTREPRENEURIAL DRUG DEVELOPERS, PATIENT ADVOCACY LEADERS, PRIVATE AND PUBLIC HEALTH CARE INSURANCE AND FOOD AND DRUG ADMINISTRATION REPRESENTATIVES. EACH SUMMIT HAS SEVERAL PANEL DISCUSSIONS SUCH AS OUTLINING THE CHALLENGES THAT THE CELIAC COMMUNITY FACES IN MANAGING CELIAC DISEASE, EXPERIENCES THAT COMMUNITY MEMBERS HAVE HAD IN PARTICIPATING IN CLINICAL TRIALS, DRUG DEVELOPMENT, CHALLENGES TO DEVELOPING NON-DIETARY THERAPIES FOR CELIAC DISEASE AND BARRIERS TO RESEARCH. BEYOND CELIAC WILL HOLD A COMMUNITY SUMMIT IN 2023 HOSTING OVER 200 PARTICIPANTS. COMMUNITY SUMMIT PARTICIPANTS HAVE THE OPPORTUNITY TO SHARE THEIR EXPERIENCES WITH CELIAC DISEASE, "TOGETHER FOR A CURE."

RESEARCH GRANTS HAVE BEEN ISSUED TO FURTHER THE RESEARCH AND STUDY OF CELIAC DISEASE.