2025-09-18T17:35:30-05:00 2023-12-31 954611603 HENSIEK & CARON CPA'S 650 SIERRA MADRE VILLA 303 PASADENA CA 91107 990 2023-01-01 954310830 CELIAC DISEASE FOUNDATION CELI 8187161513 5850 CANOGA AVE 4TH FLOOR WOODLAND HILLS CA 91367 MARILYN GRUNZWEIG GELLER CEO 8187161513 2025-09-18 1 0 SUSAN CARON P00163651 6267929988 2023 2025-03-06 01:10:19Z X X MARILYN GRUNZWEIG GELLER 5850 CANOGA AVE 4TH FLOOR WOODLAND HILLS CA 91367 6458284 0 X WWW.CELIAC.ORG X 1990 CA THE CELIAC DISEASE FOUNDATION DRIVES DIAGNOSIS, TREATMENT AND A CURE THROUGH RESEARCH, ADVOCACY AND EDUCATION. 12 12 14 15582 0 0 1469755 1927788 1600725 2154436 27932 125118 20214 -3899 3118626 4203443 75000 249000 0 0 1115792 1561157 0 0 348409 986800 1165078 2177592 2975235 941034 1228208 4468403 5959854 595648 633790 3872755 5326064 X THE CELIAC DISEASE FOUNDATION IS A LEADING GLOBAL PATIENT ADVOCACY ORGANIZATION COMMITTED TO ACCELERATING DIAGNOSIS, TREATMENTS, AND A CURE FOR CELIAC DISEASE. OUR MISSION IS TO IMPROVE THE HEALTH AND WELL-BEING OF THE MILLIONS OF INDIVIDUALS AROUND THE WORLD AFFECTED BY THIS GENETIC AUTOIMMUNE DISEASE THROUGH OUR STRATEGIC INVESTMENTS IN RESEARCH, ADVOCACY, AND EDUCATION. 0 0 2429552 249000 2154436 RESEARCHTHE CELIAC DISEASE FOUNDATION MAKES STRATEGIC INVESTMENTS IN CUTTING-EDGE BIOMEDICAL RESEARCH AND PATIENT ENGAGEMENT AND COLLABORATES WITH RESEARCHERS AND CLINICIANS TO ADVANCE UNDERSTANDING OF AND TREATMENTS FOR CELIAC DISEASE. FROM 2019-2023, THE FOUNDATION HAS FUNDED MORE THAN $1,000,000 IN INTERNATIONAL RESEARCH AWARDS AND MEDICAL CONFERENCE GRANTS TO ADVANCE KNOWLEDGE OF THE CAUSES, PROGRESSION, AND CONSEQUENCES OF CELIAC DISEASE. OUR ANNUAL GLOBAL PRIZES RECOGNIZE EXCEPTIONAL INVESTIGATORS AT ALL STAGES OF THEIR CAREER, FROM A LATER-CAREER PRIZE FOR EXCELLENCE TO YOUNG INVESTIGATOR AND STUDENT RESEARCH AWARDS. THE FOUNDATION HOSTS A RESEARCH WORKING GROUP AND RELIES ON KNOWLEDGE AND GUIDANCE FROM OUR INTERNATIONALLY RENOWNED MEDICAL ADVISORY BOARD. THE FOUNDATION ALSO FOCUSES ON IMPROVING PATIENT ENGAGEMENT IN THE RESEARCH PROCESS. WE CONTINUE TO EXPAND OUR PATIENT REGISTRY, ICURECELIAC, THAT PROVIDES RESEARCHERS WORLDWIDE WITH DATA TO ACCELERATE CELIAC DISEASE RESEARCH. THROUGH IQUALIFYCELIAC-THE LARGEST NORTH AMERICAN DATABASE OF HIGHLY MOTIVATED CELIAC DISEASE PATIENTS-AND IRECRUITCELIAC, WE OFFER PATIENT-DRIVEN CLINICAL TRIAL SCREENING PROGRAMS FOR CELIAC DISEASE, LOWERING THE COST OF PATIENT RECRUITMENT AND SPEEDING ELIGIBLE PATIENTS INTO TRIALS AND STUDIES. THE FOUNDATION ALSO PRODUCES ORIGINAL RESEARCH AND SHARES VIA POSTERS AND ABSTRACTS AT GLOBAL CONFERENCES.ADVOCACYFOR 33 YEARS, THE CELIAC DISEASE FOUNDATION AND OUR NATIONAL NETWORK OF ADVOCATES HAVE WORKED DILIGENTLY FOR FEDERAL RECOGNITION OF CELIAC DISEASE AS ONE OF THE WORLD'S MOST PREVALENT, AND LEAST DIAGNOSED, GENETIC AUTOIMMUNE DISEASES. IN 2021, NIH ISSUED ITS FIRST-EVER NOTICE OF SPECIAL INTEREST TO FUND CELIAC DISEASE RESEARCH. THIS MOMENTOUS STEP WAS THE RESULT OF A FOCUSED ADVOCACY EFFORT THAT BEGAN IN APRIL OF 2019, WHEN CEO MARILYN G. GELLER TESTIFIED BEFORE THE HOUSE APPROPRIATIONS SUBCOMMITTEE, WHICH HELPED SECURE FY2020 APPROPRIATIONS REPORT LANGUAGE DIRECTING THE NIH TO DEVOTE SUFFICIENT, FOCUSED RESEARCH TO THE STUDY OF CELIAC DISEASE FOR THE FIRST TIME EVER. EVERY NIH APPROPRIATIONS BILL SINCE FY2020 HAS INCLUDED LANGUAGE SPECIFIC TO CELIAC DISEASE. THROUGH OUR ROBUST, NATIONAL POLICY ADVOCATE TRAINING PROGRAM, THE FOUNDATION RECRUITS AND TRAINS A NETWORK OF PATIENT ADVOCATES TO ENGAGE AS CIVIC PARTNERS IN THE RESEARCH PROCESS AND TO SPEAK TO MEMBERS OF CONGRESS ON BEHALF OF THE MORE THAN THREE MILLION AMERICANS SUFFERING FROM CELIAC DISEASE. THE CONGRESSIONAL CELIAC DISEASE CAUCUS, CHAIRED BY REP. BETTY MCCOLLUM, WAS CREATED AND LAUNCHED IN 2021 IN RESPONSE TO THE FOUNDATION'S WORK. THE CELIAC DISEASE FOUNDATION WAS A FOUNDING MEMBER OF THE AMERICAN CELIAC DISEASE ALLIANCE (ACDA), WHICH ACHIEVED THE 2014 FDA GLUTEN-FREE LABELING RULE, AND IT IS ACTIVELY INVOLVED WITH THE NATIONAL INSTITUTES OF HEALTH (NIH), THE DEPARTMENT OF DEFENSE (DOD), AND THE FOOD & DRUG ADMINISTRATION (FDA) TO ELEVATE THE VOICE OF THE CELIAC PATIENT COMMUNITY. IN ADDITION TO INCREASING THE LEVEL OF NIH FUNDING FOR THE STUDY OF CELIAC DISEASE AND ENSURING THIS DISEASE CONTINUES TO BE INCLUDED IN THE DOD CONGRESSIONALY DIRECTED MEDICAL RESEARCH PROGRAMS-PEER REVIEWED MEDICAL RESEARCH PROGRAM, OUR POLICY PRIORITIES INCLUDE: IMPROVING FOOD LABELING REQUIREMENTS TO MAKE IT SAFER AND EASIER FOR PEOPLE WITH CELIAC DISEASE TO PURCHASE FOOD ITEMS THROUGH THE FOOD LABELING MODERNIZATION ACT OF 2023, EXTENDING MEDICARE AND MEDICAID COVERAGE FOR MEDICAL NUTRITION THERAPY TO BENEFICIARIES WITH CELIAC DISEASE THROUGH THE MEDICAL NUTRITION THERAPY ACT OF 2023, PROTECTING CHRONIC DISEASE PATIENTS FROM DISCRIMINATION AND BOLSTERING PATIENT PROTECTIONS, ADVOCATING FOR CONTINUED FDA FUNDING FOR ENFORCEMENT OF THE GLUTEN-FREE LABELING RULE, AND PROTECTING AND STRENGTHENING SNAP AND OTHER ANTI-HUNGER PROGRAMS. INTERNATIONALLY, THE FOUNDATION IS AN AFFILIATE MEMBER OF THE ASSOCIATION OF EUROPEAN COELIAC SOCIETIES (AOECS), REPRESENTING NORTH AMERICAN INTERESTS THROUGH WORLDWIDE COLLABORATION ON CELIAC DISEASE ADVOCACY INITIATIVES. EDUCATIONTHE CELIAC DISEASE FOUNDATION PROVIDES THE PUBLIC WITH INNOVATIVE TOOLS AND EVENTS TO PROMOTE VITAL CELIAC DISEASE EDUCATION. THROUGH CELIAC.ORG, WE ASSIST PATIENTS AND FAMILY MEMBERS THROUGH INITIATIVES LIKE THE SYMPTOMS ASSESSMENT TOOL, DESIGNED TO FACILITATE COMMUNICATION BETWEEN PATIENTS AND THEIR HEALTHCARE PRACTITIONERS; A NATIONWIDE DIRECTORY OF PRACTITIONERS SPECIALIZING IN CELIAC DISEASE; EAT! GLUTEN-FREE, A GLUTEN-FREE RECIPE HUB WITH TAILORED MEAL PLANS TO HELP THE NEWLY DIAGNOSED AND THEIR FAMILIES EASE THE TRANSITION TO A GLUTEN-FREE DIET; AND THE CELIAC DISEASE MANAGEMENT PLAN FOR SCHOOL TRAINING PROGRAM. THE FOUNDATION ALSO RECENTLY LAUNCHED A SUITE OF VIRTUAL PROGRAMMING AIMED AT VARIOUS AUDIENCES: INNOVATIONS IN CULINARY MEDICINE WEBINARS, TO BRING TOGETHER RESEARCH, EDUCATION, AND CULINARY EDUCATION; CELIAC TEEN TALK, TO ENGAGE PATIENTS AGES 12-17 WITH THEIR PEERS; LIVING WITH CELIAC VIRTUAL MEETUPS, TO HELP NEWLY DIAGNOSED PATIENTS AND CAREGIVERS; AND SCHOOL SUPPORT SESSIONS, THE FIRST EVER NATIONAL CELIAC DISEASE EDUCATION PARTNERSHIP WITH BOSTON CHILDREN'S HOSPITAL, THE UNIVERSITY OF CHICAGO CELIAC DISEASE CENTER, AND THE MAYO CLINIC TO ASSIST PARENTS OF STUDENTS FROM EARLY CHILDHOOD THROUGH COLLEGE WITH NAVIGATING 504 PLANS AND SCHOOL ACCOMMODATIONS. THE FOUNDATION HAS A ROBUST, GLOBAL REACH THROUGH CELIAC.ORG, SOCIAL MEDIA CHANNELS, AND OUR MONTHLY E-NEWSLETTER. THE FOUNDATION ALSO PROVIDES ROBUST TOOLS AND PROGRAMMING FOR HEALTHCARE PROFESSIONALS, INCLUDING THE ONLINE NASPGHAN CLINICAL GUIDE FOR PEDIATRIC CELIAC DISEASE AND THE CELIAC DISEASE AND PSYCHOLOGICAL HEALTH TRAINING PROGRAM. OUR PEER-TO-PEER FUNDRAISING PROGRAM, TEAM GLUTEN-FREE (TGF), PROVIDES A SIMPLE WAY FOR ATHLETES AND NON-ATHLETES ALIKE TO RAISE AWARENESS AND FUNDS FOR THE FOUNDATION'S PROGRAMS AND EMPOWERS OUR COMMUNITY TO CREATE POSITIVE CHANGE AT A GRASSROOTS LEVEL. 2429552 1 1 0 0 0 0 0 0 0 0 1 1 0 0 0 1 1 0 0 0 0 0 1 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 18 0 14 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA X X X THE ORGANIZATION 8187161513 5850 CANOGA AVE 4TH FLOOR WOODLAND HILLS CA 91367 X BRADLEY HERREMA BOARD SECRETARY 2.00 X X 0 0 0 JOHN WAGNER VICE CHAIR 2.00 X X 0 0 0 JORDAN RAMER TREASURER 2.00 X X 0 0 0 ADRIENNE BENDER BOARD CHAIR 2.00 X X 0 0 0 LEE JONES DEVELOPMENT COMMITTEE CHAIR 2.00 X 0 0 0 JAMIE RESIN MEMBER 2.00 X 0 0 0 WARREN SAFT MEMBER 2.00 X 0 0 0 DAN GIBBONS MEMBER 2.00 X 0 0 0 KRISTIN YAREMA MEMBER 2.00 X 0 0 0 YASITH WEERASURIYA MEMBER 2.00 X 0 0 0 CASEY GUBER MEMBER 2.00 X 0 0 0 WILLIAM THURSTON MEMBER 2.00 X 0 0 0 MARILYN GRUNZWEIG GELLER CEO 40.00 X 280800 0 16860 DEBORAH CEIZLER CDO 40.00 X 205271 0 3500 486071 0 20360 4 0 1 0 0 1927788 182376 1927788 PROGRAM INCOME 900099 1798876 1798876 SPONSORSHIPS 900099 355560 355560 2154436 90475 90475 2286384 3100 2235901 18940 50483 -15840 34643 34643 PARTNERSHIP LOSS 900099 -3899 -3899 -3899 4203443 2154436 0 121219 249000 249000 486071 382025 69479 34567 779153 624482 154671 31773 25276 1745 4752 170606 135720 9368 25518 93554 74424 5137 13993 6972 6972 85868 85868 16499 16499 25935 23677 1229 1029 60387 60387 39915 36721 1597 1597 72490 72490 25236 23218 1009 1009 11295 6841 3695 759 CLINICAL TRIALS 392363 392363 EDUCATION AND RESEARCH 174806 168848 1648 4310 FUNDRAISING CAMPAIGNS 106204 106204 ADVOCACY 76205 76205 70903 70903 2975235 2429552 197274 348409 2025005 1086120 224220 529567 149399 343759 337896 334779 54580 21336 539931 327878 37241 212053 1440044 3352031 28219 171799 80209 4468403 5959854 118186 159090 223025 139092 168582 335608 85855 0 595648 633790 X 3862755 5294564 10000 31500 3872755 5326064 4468403 5959854 1228208 225101 0 X X 0 1 X 1 0 X 1000765 1093597 1708692 1497173 2283348 7583575 1000765 1093597 1708692 1497173 2283348 7583575 7583575 112 63 23919 27932 90475 142501 7726076 6143343 0.98160 0.99190 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 539931 327878 212053 212053 EQUITIES 2071 F MUTUAL FUNDS 3349960 F 3352031 X 4759801 225101 347756 572857 4186944 16499 16499 4203443 3306492 347756 347756 2958736 16499 16499 2975235 PART X, LINE 2: THE ACCOUNTING STANDARD ON ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES PROVIDES GUIDANCE ON HOW UNCERTAIN TAX POSITIONS SHOULD BE RECOGNIZED, MEASURED, PRESENTED AND DISCLOSED IN THE FINANCIAL STATEMENTS. EXAMPLES OF TAX POSITIONS INCLUDE THE TAX-EXEMPT STATUS OF THE FOUNDATION AND VARIOUS POSITIONS RELATED TO THE POTENTIAL SOURCES OF UNRELATED BUSINESS TAXABLE INCOME (UBIT). THE FOUNDATION BELIEVES THAT IT HAS NO UNCERTAIN TAX POSITIONS THAT IMPACT ITS FINANCIAL STATEMENTS. 0 0 0 0 0 0 0 0 0 0 RESEARCH PRIZE FOR EXCELLENCE EAST ASIA AND THE PACIFIC 1 25000 WIRE TRANSFER FMV 0 0 0 0 0 0 1 COLUMBIA UNIVERSITY 180 FORT WASHINGTON AVE 936 NEW YORK NY 10032 54000 0 CELIAC DISEASE RESEARCH BOSTON'S CHILDREN'S HOSPITAL 300 LONGWOOD AVE BOSTON MA 02115 15000 0 CELIAC DISEASE RESEARCH US DAVIS 1 SHIELDS AVE DAVIS CA 95616 180000 0 CELIAC DISEASE RESEARCH 1 X X X X X 1 0 0 0 0 0 0 0 0 MARILYN GRUNZWEIG GELLER CEO 280800 0 0 0 0 0 16860 0 0 0 297660 0 0 0 DEBORAH CEIZLER CDO 205271 0 0 0 0 0 3500 0 0 0 208771 0 0 0 PART I, LINE 4A DEBORAH CEIZLER, SEVERANCE $89,000 X 56043 FMV X 126333 FMV 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS REVIEWED BY THE CEO AND THE FINANCE COMMITTEE BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS ARE REQUIRED TO DISCLOSE ANY ACTUAL, POTENTIAL, OR PERCEIVED CONFLICTS OF INTEREST AT TIME OF APPOINTMENT, ANNUALLY AND AS THEY ARISE; DISCLOSED CONFLICTS ARE REVIEWED AND MANAGED IN ACCORDANCE WITH THE FOUNDATION'S CONFLICT OF INTEREST POLICY. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS REVIEWS COMPENSATION FOR THE CEO ANNUALLY TO DETERMINE THAT THE COMPENSATION IS REASONABLE. FORM 990, PART VI, SECTION C, LINE 19 THE 990 IS REVIEWED BY THE CHIEF EXECUTIVE OFFICER BEFORE FILING AND THE FINANCE COMMITTEE OF THE BOARD OF DIRECTORS. PART VI, SECTION B, LINE 12B AND 12C THE CONFLICT OF INTEREST QUESTIONS WERE ANSWERED INCORRECTLY. THE AMENDED RETURN UPDATES THE ANSWERS TO THE QUESTIONS.