2026-09-14T09:27:43-05:00 2025-10-31 471352305 O'CONNELL & COMPANY LLC 240 GIBRALTAR ROAD SUITE 260 HORSHAM PA 19044 990 2024-11-01 900108854 BEYOND CELIAC BEYO 2153251306 PO BOX 544 AMBLER PA 19002 MARY KATE CAROFANO CEO 2153251306 2026-09-11 1 0 JOHN W RUTECKI CPA P02295032 2158874425 2026-09-14 2024 BEYOND CELIAC MARY KATE CAROFANO 3167731 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. 21 20 20 462 0 0 2116163 2021099 637581 423855 102407 115754 440796 541841 3296947 3102549 786988 137047 0 0 1591280 2082505 0 0 545409 607650 522200 2985918 2741752 311029 360797 5399178 6096770 589552 549485 4809626 5547285 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 137087 137047 423858 WE SUPPORT STUDIES, BASED ON OUR COMMUNITY'S NEEDS, THAT QUICKLY TRANSLATE FROM SCIENTIFIC DISCOVERY INTO CLINICAL USE, WITH THE GOAL OF ADVANCING EFFECTIVE TREATMENTS. AS OF FY25, BEYOND CELIAC HAS AWARDED MORE THAN $3.2 MILLION IN GRANTS, SUPPORTING BOTH EARLY-CAREER AND ESTABLISHED INVESTIGATORS. THE LATEST GRANTS FOCUS ON NON-INVASIVE BIOMARKERS, MICROBIOME RESEARCH, IMMUNE TOLERANCE RESTORATION, AND NEUROCOGNITIVE IMPACTS.SELECT AWARDS INCLUDE:1. NIGEL HOGGARD, MD, AND IAIN CROALL, PHD (UNIVERSITY OF SHEFFIELD, UK): ASSESSING TG6 ANTIBODIES FOR CLINICAL PRACTICE.2. MANDEEP SINGH, PHD (UNIVERSITY OF SYDNEY, AUS) TARGETING MUTANT T-CELLS IN NON-RESPONSIVE CELIAC DISEASE.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 GONCALVES PEREIRA, PHD (INSTITUTO POLITECNICO DE LEIRIA, PORTUGAL): EXPLORING GLUTEN-MICROBIOTA INTERACTIONS IN DISEASE PROGRESS.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). 1454082 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 INSIGHTS PLAYS A VITAL ROLE IN BRIDGING THE GAP BETWEEN LIVED EXPERIENCE AND SCIENTIFIC ADVANCEMENT. THE SURVEY PLATFORM HAS ENHANCED OUTREACH AND INCREASED COMMUNITY PARTICIPATION IN RESEARCH. BEYOND CELIAC ALSO CONNECTS PATIENTS TO CLINICAL TRIALS, ACCELERATING ENROLLMENT AND FACILITATING DRUG DEVELOPMENT. THESE EFFORTS ARE INSTRUMENTAL TO DE-RISKING THE THERAPEUTIC PIPELINE AND DRAWING INCREASED INTEREST FROM INVESTORS, PHARMACEUTICAL COMPANIES, AND BIOTECH. BEYOND CELIAC LEADS A PRECOMPETITIVE COALITION OF MULTIDISCIPLINARY STAKEHOLDERS INVOLVED IN THE DEVELOPMENT OF POTENTIAL THERAPIES FOR CELIAC DISEASE. BEYOND CELIAC INVESTMENTS (BCI) VENTURE PHILANTHROPY PROGRAM LAUNCHED A CATALYST PROGRAM TO SCREEN FOR EARLY-STAGE CANDIDATES WITH THE POTENTIAL FOR TRANSFORMATIONAL EFFICACY IN CELIAC DISEASE. THE INAUGURAL PROPOSAL PROCESS IDENTIFIED THE FIRST INVESTMENTS NOW PENDING THROUGH BCI. BEYOND CELIAC SCIENCE TEAM MEMBERS PRESENTED AT MAJOR MEETINGS, INCLUDING THE AMERICAN ACADEMY OF NEUROLOGY CONFERENCE AND DIGESTIVE DISEASE WEEK. ORIGINAL RESEARCH WAS PUBLISHED IN THE JOURNAL OF CLINICAL MEDICINE AND DIGESTIVE DISEASES AND SCIENCES.ADDITIONAL PROGRAM ACTIVITIES INCLUDING PATIENT, AMBASSADOR, AND OTHER PROGRAMS. REACH BEYOND CELIAC PROGRAMS THROUGH 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, SURVEY CREATION, WEB DEVELOPMENT, AND ADVOCACY INITIATIVES, STRENGTHENING OUR NATIONAL PRESENCE AND EXPANDING THE ORGANIZATION'S REACH AND IMPACT. PATIENT EDUCATION AND SUPPORT PROGRAMS BEYOND 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. 1591169 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 19 0 20 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 X 21 20 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 NAISHA DAVIS 2153251306 PO BOX 544 AMBLER PA 19002 TODD HAMMER VICE CHAIR 3.00 X X 0 0 0 R BENNETT MUSKIN SECRETARY 3.00 X X 0 0 0 ALICE BAST EXECUTIVE DIRECTOR 40.00 X X 344615 0 5718 LAWRENCE P FLYNN CPA TREASURER 4.00 X X 0 0 0 ALAN M EHRLICH MD CHAIR 4.00 X X 0 0 0 LISA R AGDERN DIRECTOR 4.00 X 0 0 0 JAMES ANDREWS DIRECTOR 2.00 X 0 0 0 ZACK BOGER DIRECTOR 3.00 X 0 0 0 C KANE BRENAN DIRECTOR 2.00 X 0 0 0 ARTURO CHACON CRUZ DIRECTOR 2.00 X 0 0 0 VALERIE COHN DIRECTOR 2.00 X 0 0 0 SHARON GAFFNEY DIRECTOR 1.00 X 0 0 0 CAROLE HAAS GRAVAGNO DIRECTOR 1.00 X 0 0 0 DOUG JACOBSTEIN DIRECTOR 1.00 X 0 0 0 JAIME LIPSON DIRECTOR 2.00 X 0 0 0 ALISON REEMER 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 BARB WEIR POWERS DIRECTOR 2.00 X 0 0 0 SARENA SNIDER DIRECTOR 2.00 X 0 0 0 JENNIFER PLATZKERE SNYDER ESQ DIRECTOR 2.00 X 0 0 0 MARY KATE CAROFANO CHIEF OPERATING OFFICER 40.00 X 225000 0 0 ANGELA CRIST DIRECTOR OF COMMUNICATIONS 40.00 X 109004 0 0 GEORGE GORGE SENIOR DIRECTOR OF FINANCE 35.00 X 102342 0 0 DEBRA SILBERG CHIEF SCIENTIFIC OFFICER 20.00 X 130343 0 0 MARY TACKETT SENIOR DIRECTOR OF PHILANTHROPY 32.00 X 103262 0 0 ERIC WHITE DIRECTOR OF BUSINESS DEVELOPMENT 30.00 X 105692 0 0 1120258 0 5718 7 0 1 0 0 2021099 2021099 CORPORATE SUPPORT 900099 200292 200292 OTHER PROGRAM REVENUE 900099 133713 133713 CLINICAL TRIALS FEES 900099 89500 89500 GREAT PROGRAM 900099 350 350 423855 115754 115754 607023 65182 541841 541841 3102549 423855 0 657595 70000 70000 67047 67047 575334 414658 35181 125495 1300761 664975 403113 232673 74784 51863 9405 13516 131626 90980 15865 24781 17999 8330 8047 1622 23929 23929 145621 67390 65104 13127 1322 1322 53918 34864 1743 17311 61008 60164 800 44 1400 605 795 55675 17909 18129 19637 20820 14637 4888 1295 1405 1405 7691 2841 4060 790 PROGRAMS AND PRODUCTION 42671 222 42449 DUES AND SUBSCRIPTIONS 30442 9841 2175 18426 BANK CHARGES AND OTHER 13880 296 1125 12459 MISCELLANEOUS 13056 2000 11056 31363 12547 10815 8001 2741752 1591169 605174 545409 306900 144131 1329112 1376612 743491 1255441 321354 98459 20676 123323 23141 18866 3253 4275 2674392 3094529 5399178 6096770 200093 189323 141218 41546 248241 318616 589552 549485 X 1961656 2043179 2847970 3504106 4809626 5547285 5399178 6096770 360797 376862 0 X 0 1 X 1 0 X 1562376 1726718 2178724 2116163 2021099 9605080 1562376 1726718 2178724 2116163 2021099 9605080 9605080 99041 136463 120430 102407 115754 574095 332871 366226 364973 519458 607023 2190551 12369726 2617985 0.77650 0.77650 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FUNDRAISING EVENTS REVENUE - 2020 AMOUNT: $ 332,871. 2021 AMOUNT: $ 366,226. 2022 AMOUNT: $ 364,973. 2023 AMOUNT: $ 519,458. 2024 AMOUNT: $ 607,023. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1609148 238215 104598 1742764 1414842 306811 112505 1609148 1458791 75100 119049 1414842 1948024 -310959 178274 1458791 1695283 381550 118809 1958024 1.00000 0 0 23141 18866 4275 4275 X 4507298 376862 1051817 1428679 3078619 23930 23930 3102549 3769639 1051817 1051817 2717822 23930 23930 2741752 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 67047 CHECK 0 1 0 0 0 0 0 0 PART I, LINE 2: BEYOND CELIAC REQUIRED GRANTEES TO MEET CERTAIN REPORTING AND PROGRESS CONDITIONS. GALA 431799 431799 39283 5K STEP BEYOND 149304 149304 24766 2 25920 25920 1133 607023 607023 65182 65182 541841 1 ROK SEON CHOUNG MAYO CLINIC 200 FIRST ST SW ROCHESTER MN 55905 410944601 501(C3) 70000 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 EXECUTIVE DIRECTOR 284615 0 60000 0 0 0 0 0 5718 0 350333 0 0 0 MARY KATE CAROFANO CHIEF OPERATING OFFICER 225000 0 0 0 0 0 0 0 0 0 225000 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B BEYOND CELIAC STAFF PREPARE FORM 990 WITH INPUT FROM LEADERSHIP. THE PRESIDENT REVIEWS THE DRAFT AND SHARES IT WITH THE AUDIT COMMITTEES FOR REVIEW AND INPUT. THE DRAFT IS ALSO SHARED WITH THE BOARD OF DIRECTORS BEFORE FINAL SUBMISSION TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS AND KEY EMPLOYEES MUST COMPLETE ANNUAL CONFLICT-OF-INTEREST DISCLOSURES, WHICH THE GOVERNANCE COMMITTEE REVIEWS. 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 THE PHILADELPHIA AREA AND ACROSS THE US. 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 NON-PROFIT TRANSPARENCY PLATFORMS SUCH AS GUIDESTAR (CANDID).