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.INVESTIGATORS HAVE COMPILED THE RESULTS OF THEIR RESEARCH IN A MANUSCRIPT THEY HAVE SUBMITTED TO A SCIENTIFIC JOURNAL FOR PUBLICATION. ARNOLD HAN, MD, PHD, OF COLUMBIA UNIVERSITY, WAS AWARDED THE BEYOND CELIAC/SOCIETY FOR THE STUDY OF CELIAC DISEASE 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. INVESTIGATORS WERE CLOSE TO CONCLUDING THEIR WORK AT THE END OF 2023 AND WERE BEGINNING TO PREPARE MANUSCRIPTS FOR SUBMISSION TO SCIENTIFIC JOURNALS 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. SHALEV ITZKOVITS, PHD, WEIZMAN INSTITUTE OF SCIENCE, REHOVET, ISRAEL IN COLLABORATION WITH THE SCHNEIDER CHILDRENS MEDICAL CENTER, PETAH TIKVA, ISRAEL, RECEIVED A RESEARCH ACCELERATOR AWARD TO STUDY SHED CELL TRANSCIPTOMICS FOR THE IDENTIFICATION OF CELIAC DISEASE DYNAMICS. MICHAEL FITZPATRICK, MRCP, DPHIL OF THE UNIVERSITY OF OXFORD, OXFORD, UK, RECEIVED A RESEARCH ACCELERATOR AWARD TO STUDY NOVEL BIOMARKERS OF MUCOSAL DAMAGE FOR NON- INVASIVE DIAGNOSIS AND MONITORING OF CELIAC DISEASE. ROK SEON CHOUNG, MD, PHD, MAYO CLINIC, ROCHESTER, MINN, IN COLLABORATION WITH THE NAVAL MEDICAL CENTER, MARYLAND, AND ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI, NEW YORK, RECEIVED AN ESTABLISHED INVESTIGATOR AWARD TO STUDY IDENTIFYING PREDICTORS FOR PROGRESSIVE PHENOTYPES OF CELIAC DISEASE. SONIA GONCALVES PEREIRA, PHD, INSTITUTE POLITECNICO DE LINVESTIGATE, ASORTUGAL, IN COLLABORATION WITH THE CELIAC DISEASE RESEARCH CENTER AT TAMPERE UNIVERSITY, TAMPERE, FINLAND, RECEIVED AN ESTABLISHED INVESTIGATOR AWARD TO INVESTIGATE, AS PART OF THE CELIAC(TIV) STUDY, THE MECHANISMS OF GLUTEN-MICROBIOTA INTERACTION IN CELIAC DISEASE. KATI JUTTI- UUSITALO, PHD, TAMPERE UNIVERSITY, TAMPERE, FINLAND, RECEIVED AN ESTABLISHED INVESTIGATOR AWARED TO STUDY PRECLINIC TWO-D CELIAC DISEASE PATIENT-BASED IPSC-SMALL INTESTINAL EPITHELIAL IN VITRO MODEL RESEARCH PARTNERSHIPS: BEYOND CELIAC AND TAKEDA PHARMACEUTICAL COMPANY HAVE PARTNERED ON A DIVERSITY AND HEALTHCARE EQUITY INITIATIVE IN CELIAC DISEASE. BEYOND CELIAC AND TAKEDA PHARMACEUTICAL COMPANY HAVE ENTERED A MULTI-YEAR PARTNERSHIP TO IDENTIFY AND REDUCE DISPARITIES IN CELIAC DISEASE DIAGNOSIS AND MANAGEMENT, AIMING TO RAISE AWARENESS AND HELP MINORITY PATIENTS PARTICIPATE IN CLINICAL TRIALS.THE PARTNERSHIP FOCUSES ON IMPROVING ASPECTS OF DIVERSITY, EQUITY, AND INCLUSION IN CELIAC DISEASE. THIS INCLUDES A DATA ANALYSIS TO IDENTIFY ACCESS BARRIERS TO DIAGNOSIS AND TREATMENT, SUBOPTIMAL CELIAC DISEASE CLINICAL MANAGEMENT, AND UNDERREPRESENTATION OF MINORITY GROUPS IN CLINICAL TRIALS. IN ADDITION, THE PARTNERSHIP AIMS TO EDUCATE AND INCREASE SOCIETAL AWARENESS OF CELIAC DISEASE. 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.

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

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 8,880 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 AND COMMUNITY SUMMITS BEYOND CELIAC HAS HOSTED RESEARCH AND COMMUNITY 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". THIS SUMMIT BROUGHT 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 AND COMMUNITY 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 HELD 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."