2025-09-03T12:15:48-05:00 2024-10-31 471352305 O'CONNELL & COMPANY LLC 240 GIBRALTAR ROAD SUITE 260 HORSHAM PA 19044 990 2023-11-01 900108854 BEYOND CELIAC BEYO 2153251306 PO BOX 544 AMBLER PA 19002 ALICE BAST CEO 2153251306 2025-08-29 1 0 JOHN W RUTECKI CPA P02295032 2158874425 2025-09-03 2023 2025-03-06 01:10:19Z X BEYOND CELIAC ALICE BAST 3375609 0 X WWW.BEYONDCELIAC.ORG X 2003 PA BEYOND CELIAC UNITES WITH PATIENTS AND PARTNERS TO DRIVE DIAGNOSIS, ADVANCE RESEARCH, AND ACCELERATE THE DISCOVERY OF NEW TREATMENTS AND A CURE FOR CELIAC DISEASE. 18 17 22 418 0 0 2178724 2116163 586491 637581 120430 102407 207632 440796 3093277 3296947 702747 786988 0 0 1678019 1591280 0 0 405214 559853 607650 2940619 2985918 152658 311029 4610157 5399178 839132 589552 3771025 4809626 X BEYOND CELIAC UNITES WITH PATIENTS AND PARTNERS TO DRIVE DIAGNOSIS, ADVANCE RESEARCH, AND ACCELERATE THE DISCOVERY OF NEW TREATMENTS AND A CURE. 0 0 2216922 637581 RESEARCH GRANTS: BEYOND CELIAC IS THE LEADING PATIENT-FOCUSED HEALTHCARE NONPROFIT AND FUNDER OF CELIAC DISEASE RESEARCH. THROUGH OUR TRANSLATIONAL RESEARCH PROGRAM... READ MORE ON SCHEDULE O. WE SUPPORT STUDIES, BASED ON OUR COMMUNITY NEEDS, THAT QUICKLY TRANSLATE FROM SCIENTIFIC DISCOVERY INTO CLINICAL USE, WITH THE GOAL OF ADVANCING EFFECTIVE TREATMENTS.AS OF FY24, BEYOND CELIAC HAS AWARDED MORE THAN $3.3 MILLION IN GRANTS, SUPPORTING BOTH EARLY-CAREER AND ESTABLISHED INVESTIGATORS. THE LATEST GRANTS FOCUS ON NON-INVASIVE BIOMARKERS, MICROBIOME RESEARCH, AND IMMUNE TOLERANCE RESTORATION.SELECT AWARDS INCLUDE:1. SHAYNA COBURN, PHD (CHILDREN'S NATIONAL HOSPITAL, DC): INTEGRATING GLUTEN IMMUNOGENIC PEPTIDE TESTING IN A BEHAVIORAL INTERVENTION.2. SHALEV ITZKOVITZ, PHD (WEIZMANN INSTITUTE, ISRAEL): SHED CELL TRANSCRIPTOMICS TO ASSESS CELIAC DISEASE ACTIVITY.3. MICHAEL FITZPATRICK, DPHIL (UNIVERSITY OF OXFORD, UK): NOVEL BIOMARKERS OF MUCOSAL DAMAGE FOR DIAGNOSIS AND MONITORING.4. ROK SEON CHOUNG, MD, PHD (MAYO CLINIC): PREDICTORS OF PROGRESSIVE CELIAC DISEASE PHENOTYPES.5. SONIA GONALVES PEREIRA, PHD (INSTITUTO POLITECNICO DE LEIRIA, PORTUGAL): EXPLORING GLUTEN-MICROBIOTA INTERACTIONS IN DISEASE PROGRESSION.6. KATI JUUTI-UUSITALO, PHD (TAMPERE UNIVERSITY, FINLAND): DEVELOPMENT OF A PATIENT-DERIVED 2D INTESTINAL MODEL.THESE GRANTS ADDRESS CRITICAL BARRIERS IN THE FIELD, INCLUDING A LACK OF FUNDING, UNDERDIAGNOSIS, AND LIMITED PUBLIC AND CLINICAL AWARENESS. THEY ALIGN WITH OUR FOUR STRATEGIC PRIORITIES: TRANSLATIONAL RESEARCH, EVIDENCE GENERATION, CLINICAL TRIAL ACCELERATION, AND OUR VENTURE PHILANTHROPY PROGRAM THROUGH BEYOND CELIAC INVESTMENTS (BCI). 49674 EVIDENCE GENERATION AND CLINICAL TRIALS: THROUGH THE GO BEYOND CELIAC PLATFORM AND OTHER INITIATIVES, BEYOND CELIAC COLLECTS REAL-WORLD DATA FROM INDIVIDUALS WITH CELIAC DISEASE AND NON-CELIAC GLUTEN SENSITIVITY... READ MORE ON SCHEDULE O.THIS EVIDENCE INFORMS RESEARCH PRIORITIES, SUPPORTS FUNDING APPLICATIONS, AND ENSURES PATIENT EXPERIENCES SHAPE THE PATH TOWARD NEW TREATMENTS.WITH UP TO 80% OF CELIAC DISEASE CASES STILL UNDIAGNOSED OR MISDIAGNOSED, GO BEYOND CELIAC PLAYS A VITAL ROLE IN BRIDGING THE GAP BETWEEN LIVED EXPERIENCE AND SCIENTIFIC ADVANCEMENT. THE PLATFORM HAS ENHANCED OUTREACH, INCREASED COMMUNITY PARTICIPATION IN RESEARCH, AND PROMOTED DIVERSITY AND HEALTHCARE EQUITY.BEYOND CELIAC ALSO CONNECTS PATIENTS TO CLINICAL TRIALS, ACCELERATING ENROLLMENT AND FACILITATING DRUG DEVELOPMENT. THESE EFFORTS ARE INSTRUMENTAL IN DE-RISKING THE THERAPEUTIC PIPELINE AND DRAWING INCREASED INTEREST FROM INVESTORS, PHARMACEUTICAL COMPANIES, AND BIOTECH. 48971 RESEARCH SUMMIT: IN OCTOBER 2024, BEYOND CELIAC CO-HOSTED THE 2024 BEYOND CELIAC RESEARCH SUMMIT WITH THE CHILDREN'S HOSPITAL OF PHILADELPHIA... READ MORE ON SCHEDULE O.THE SUMMIT BROUGHT TOGETHER RESEARCHERS, CLINICIANS, ACADEMICS, AND PATIENT ADVOCATES TO EXPLORE THE LATEST SCIENTIFIC DEVELOPMENTS.FEATURED PRESENTATIONS INCLUDED:1. DR. SONIA GONALVES PEREIRA ON MICROBIOME MECHANISMS IN DISEASE PROGRESSION.2. DR. MICHAEL FITZPATRICK ON NOVEL MONITORING METHODS BEYOND BLOOD TESTS.3. DR. ARNOLD HAN ON THE ROLE OF CD8 T CELLS IN CELIAC DISEASE. THE SUMMIT ALSO SPOTLIGHTED BEYOND CELIAC-FUNDED RESEARCH AND INCLUDED DISCUSSIONS ON CLINICAL TRIAL ACCELERATION, PATIENT REGISTRIES, AND EQUITY-FOCUSED RESEARCH. THESE SUMMITS SERVE AS A HUB FOR COLLABORATION AND PROGRESS IN THE FIELD OF CELIAC DISEASE SCIENCE. 786988 ADDITIONAL PROGRAM ACTIVITIES INCLUDING PATIENT, AMBASSADOR AND OTHER PROGRAMS:REACH BEYOND CELIAC PROGRAMSTHROUGH OUR REACH BEYOND CELIAC INITIATIVE, WE EMPOWER COMMUNITY LEADERS THROUGH THE AMBASSADOR PROGRAM, INTERN PROGRAM, AND OTHER VOLUNTEER-DRIVEN ENGAGEMENT. AMBASSADORS TAILOR THEIR EFFORTS TO THEIR COMMUNITIES HOSTING EVENTS, FOSTERING PEER-TO-PEER SUPPORT, AND RAISING AWARENESS NATIONWIDE. OUR INTERNS AND AMBASSADORS COLLABORATE WITH STAFF ON LOCAL OUTREACH, CONTENT DEVELOPMENT, AND ADVOCACY INITIATIVES, STRENGTHENING OUR NATIONAL PRESENCE AND EXPANDING THE ORGANIZATION'S REACH AND IMPACT. PATIENT EDUCATION & SUPPORT PROGRAMSBEYOND CELIAC PROVIDES ESSENTIAL EDUCATIONAL RESOURCES TO PATIENTS AT ALL STAGES OF THEIR CELIAC JOURNEY. OUR "NEWLY DIAGNOSED GUIDE" OFFERS COMPREHENSIVE TOOLS FOR UNDERSTANDING CELIAC DISEASE AND INITIATING A GLUTEN-FREE DIET. WE ALSO PUBLISH DOWNLOADABLE TOOLKITS AND HOST WEBINARS FOR SPECIFIC POPULATIONS, STUDENTS, PARENTS, AND ADULTS COVERING TOPICS LIKE READING FOOD LABELS, MANAGING CROSS-CONTAMINATION, AND NAVIGATING SOCIAL SETTINGS. THROUGH TOWN HALLS, VIRTUAL Q&A SESSIONS, AND ACCESSIBLE ONLINE MATERIALS, OUR PATIENT PROGRAMS PROMOTE SELF-ADVOCACY, INFORMED DECISION-MAKING, AND ONGOING COMMUNITY CONNECTION. 786988 2315567 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 10 0 22 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 X 18 17 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 PA AZ CA CT FL IL MD MN NC NJ NY OH TX VA WA X X GEORGE GORGE 2153251306 PO BOX 544 AMBLER PA 19002 TODD HAMMER VICE CHAIR 2.00 X X 0 0 0 R BENNETT MUSKIN SECRETARY 3.00 X X 0 0 0 ALICE BAST CEO 40.00 X X 298795 0 6556 LAWRENCE P FLYNN CPA TREASURER 4.00 X X 0 0 0 ALAN M EHRLICH MD CHAIR 4.00 X X 0 0 0 C KANE BRENAN DIRECTOR 3.00 X 0 0 0 CAROLE HAAS GRAVAGNO DIRECTOR 1.00 X 0 0 0 ALISON SOLOMON DIRECTOR 1.00 X 0 0 0 BRITTANY BAKER DIRECTOR 1.00 X 0 0 0 JENNIFER BROWNSTEIN DIRECTOR 2.00 X 0 0 0 ARTURO CHACON CRUZ DIRECTOR 1.00 X 0 0 0 SARENA SNIDER DIRECTOR 2.00 X 0 0 0 LISA R AGDERN DIRECTOR 2.00 X 0 0 0 VALERIE COHN DIRECTOR 1.00 X 0 0 0 SHARON GAFFNEY DIRECTOR 1.00 X 0 0 0 BARBARA WEIR POWERS DIRECTOR 3.00 X 0 0 0 JAMES ANDREWS DIRECTOR 1.00 X 0 0 0 JENNIFER PLATZKERE SNYDER ESQ DIRECTOR 2.00 X 0 0 0 MARY KATE CAROFANO COO 40.00 X 175239 0 5226 474034 0 11782 2 0 1 0 0 2116163 2116163 CORPORATE SUPPORT 900099 333770 333770 PHARMA CONSORTIUM 900099 129917 129917 CLINICAL TRIALS FEES 900099 107757 107757 OTHER PROGRAM REVENUE 900099 43993 43993 GREAT PROGRAM 900099 22144 22144 637581 102407 102407 519458 78662 440796 440796 3296947 637581 0 543203 237076 237076 549912 549912 478846 296225 83499 99122 973345 813811 25456 134078 36291 29139 1194 5958 102798 80417 5435 16946 18000 14708 837 2455 30035 30035 180276 52621 79657 47998 3844 148 3696 51982 36809 705 14468 63705 62309 975 421 694 39 577 78 73476 37693 6198 29585 18675 15149 628 2898 10977 10416 561 7267 981 6003 283 PROGRAMS AND PRODUCTION 54880 54356 85 439 DUES AND SUBSCRIPTIONS 26288 6886 3375 16027 PERSONNEL COSTS 23155 3979 18926 250 BANK CHARGES AND OTHER 17425 200 159 17066 26971 12693 1393 12885 2985918 2315567 265137 405214 302186 306900 130098 1329112 476047 743491 133148 321354 69255 20676 20714 17461 646 3253 3498777 2674392 4610157 5399178 159373 200093 65000 141218 614759 248241 839132 589552 X 1511287 1961656 2259738 2847970 3771025 4809626 4610157 5399178 311029 727572 0 X 0 1 X 1 0 X 1033981 1562376 1726718 2178724 2116163 8617962 1033981 1562376 1726718 2178724 2116163 8617962 8617962 56978 99041 136463 120430 102407 515319 380961 332871 366226 364973 519458 1964489 11097770 2580832 0.77650 0.76250 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FUNDRAISING EVENTS REVENUE - 2019 AMOUNT: $ 380,961. 2020 AMOUNT: $ 332,871. 2021 AMOUNT: $ 366,226. 2022 AMOUNT: $ 364,973. 2023 AMOUNT: $ 519,458. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1414842 306811 112505 1609148 1458791 75100 119049 1414842 1948024 -310959 178274 1458791 1695283 381550 118809 1958024 1725258 91149 121124 1695283 1.00000 0 0 20714 17461 3253 3253 X 4561572 727572 567088 1294660 3266912 30035 30035 3296947 3522971 567088 567088 2955883 30035 30035 2985918 PART X, LINE 2: BEYOND CELIAC IS EXEMPT FROM INCOME TAX UNDER IRC SECTION 501(C)(3), THOUGH IT IS SUBJECT TO TAX ON INCOME UNRELATED TO ITS EXEMPT PURPOSE, UNLESS THAT INCOME IS OTHERWISE EXCLUDED BY THE CODE. BEYOND CELIAC HAS PROCESSES PRESENTLY IN PLACE TO ENSURE THE MAINTENANCE OF ITS TAX-EXEMPT STATUS; TO IDENTIFY AND REPORT UNRELATED INCOME; TO DETERMINE ITS FILING AND TAX OBLIGATIONS; AND TO IDENTIFY AND EVALUATE OTHER MATTERS THAT MAY BE CONSIDERED TAX POSITIONS. BEYOND CELIAC HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. 1 0 0 0 0 0 0 0 0 0 UNITED KINGDOM RESEARCH 53000 CHECK 0 UNITED KINGDOM RESEARCH 174747 CHECK 0 PORTUGAL RESEARCH 100000 CHECK 0 ISRAEL RESEARCH 175000 CHECK 0 FINLAND RESEARCH 100000 CHECK 0 0 0 0 0 0 0 PART I, LINE 2: BEYOND CELIAC REQUIRED GRANTEES TO MEET CERTAIN REPORTING AND PROGRESS CONDITIONS. GALA 291688 291688 44809 5K STEP BEYOND 116293 116293 33047 2 111477 111477 806 519458 519458 78662 78662 440796 1 ROK SEON CHOUNG MAYO CLINIC 200 FIRST ST SW ROCHESTER MN 55905 410944601 501(C3) 100000 0 RESEARCH 1 PART I, LINE 2: BEYOND CELIAC REQUIRED GRANTEES TO MEET CERTAIN REPORTING AND PROGRESS CONDITIONS. 0 0 0 0 0 0 0 0 0 ALICE BAST CEO 253795 0 45000 0 0 0 0 0 6556 0 305351 0 0 0 MARY KATE CAROFANO COO 175239 0 0 0 0 0 0 0 5226 0 180465 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS PREPARED BY BEYOND CELIAC STAFF WITH INPUT FROM LEADERSHIP. THE DRAFT IS REVIEWED BY THE CEO AND PROVIDED TO THE ALL BOARD OF DIRECTORS PRIOR TO FILING. AUDIT, FINANCE AND ADVANCEMENT COMMITTEES REVIEW AND PROVIDE INPUT BEFORE FINAL SUBMISSION TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C ALL BOARD MEMBERS AND KEY EMPLOYEES ARE REQUIRED TO COMPLETE ANNUAL CONFLICT-OF-INTEREST DISCLOSURES. THESE ARE REVIEWED BY THE GOVERNANCE COMMITTEE. INDIVIDUALS WITH IDENTIFIED CONFLICTS RECUSE THEMSELVES FROM RELATED DECISIONS IN ACCORDANCE WITH THE ORGANIZATION'S CONFLICT OF INTEREST POLICY. FORM 990, PART VI, SECTION B, LINE 15A BEYOND CELIAC BOARD CHAIR, TREASURER, AND BEYOND CELIAC BOARD COMMITTEE MEMBERS SOLICIT SALARY AND JOB DESCRIPTION INFORMATION DIRECTLY FROM COMPARABLE NON-PROFIT ORGANIZATIONS IN PHILADELPHIA AREA AND ACROSS THE U.S. INFORMATION FROM AVAILABLE ONLINE SOURCES (I.E. GUIDESTAR) REGARDING NON-PROFIT SALARIES ASSISTED WITH THESE COMPARISONS. FORM 990, PART VI, SECTION C, LINE 19 BEYOND CELIAC MAKES ITS GOVERNING DOCUMENTS, FINANCIAL STATEMENTS, AND FORM 990 AVAILABLE TO THE PUBLIC UPON REQUEST AND ON ITS WEBSITE. WE ALSO PUBLISH FINANCIAL INFORMATION THROUGH NONPROFIT TRANSPARENCY PLATFORMS SUCH AS GUIDESTAR (CANDID).