2026-09-04T13:00:48-05:00 2025-12-31 362239746 SASSETTI LLC 2107 SWIFT DRIVE SUITE 210 OAK BROOK IL 60523 990 2025-01-01 364378232 FOUNDATION FOR SARCOIDOSIS RESEARCH FOUN 3123410500 320 W OHIO ST 300 CHICAGO IL 60654 MARY MCGOWAN PRESIDENT AND CEO 7733288156 2026-08-31 1 IZABELA POLUDNIAK P01959192 7083861433 2026-08-31 2025 MARY MCGOWAN 320 W OHIO ST 300 CHICAGO IL 60654 9664957 0 X WWW.STOPSARCOIDOSIS.ORG X 2000 IL THE FOUNDATION FOR SARCOIDOSIS RESEARCH (FSR) IS THE LEADING INTERNATIONAL ORGANIZATION DEDICATED TO FINDING A CURE FOR SARCOIDOSIS AND IMPROVING CARE FOR SARCOIDOSIS PATIENTS THROUGH RESEARCH, EDUCATION, AND SUPPORT. SINCE ITS ESTABLISHMENT IN 2000, FSR HAS FOSTERED OVER $7.5 MILLION IN SARCOIDOSIS SPECIFIC RESEARCH EFFORTS. 14 14 20 125 0 0 13025070 3985033 192325 97267 364032 717533 4438 -137775 13585865 4662058 952335 875600 0 0 1334219 1772381 0 0 263542 1081462 1162977 3368016 3810958 10217849 851100 17183158 18793381 1172431 1107498 16010727 17685883 X THE FOUNDATION FOR SARCOIDOSIS RESEARCH (FSR) IS THE LEADING INTERNATIONAL ORGANIZATION DEDICATED TO FINDING A CURE FOR SARCOIDOSIS AND IMPROVING CARE FOR SARCOIDOSIS PATIENTS THROUGH RESEARCH, EDUCATION, AND SUPPORT. SINCE ITS ESTABLISHMENT IN 2000, FSR HAS FOSTERED OVER $7.5 MILLION IN SARCOIDOSIS SPECIFIC RESEARCH EFFORTS. 1 0 1553084 844600 85903 FSR RESEARCH FUNDING - THE FOUNDATION FOR SARCOIDOSIS RESEARCH PROVIDED $875,600 IN SARCOIDOSIS RESEARCH FUNDING IN 2025. FSR PROVIDED THREE FELLOWSHIPS IN THE AMOUNT OF $150,000 EACH, TWO CARDIAC GRANTS IN THE AMOUNT OF $100,000 EACH, TWO PILOT GRANTS IN THE AMOUNTS OF $100,000 AND $99,600, AND ONE FSR/AMERICAN HEART ASSOCIATION PARTNER GRANT IN THE AMOUNT OF $26,000. FSR ALSO HOSTS A PATIENT REGISTRY WITH NEARLY 7,500 PARTICIPANTS FROM 68 COUNTRIES AND PROVIDES ONGOING SUPPORT TO ACADEMIA AND INDUSTRY IN ENSURING ALL CLINICAL TRIALS AND RESEARCH ARE PATIENT CENTERED. 1096474 31000 11364 FSR GLOBAL SARCOIDOSIS CLINIC ALLIANCE (FSR-GSCA) CLINICAL SUPPORT - COMPRISED OF 46 MEMBER INSTITUTIONS, THE FSR-GSCA IS A POWERFUL NETWORK OF INSTITUTIONS THAT SUPPORT PATIENTS, CAREGIVERS, AND CLINICIANS, THROUGH EDUCATIONAL AND SUPPORT PROGRAMMING. THE FSR-GSCA REACHES OVER 4000 CLINICIANS WITH CLINICAL EDUCATION PROGRAMMING FROM OVER 40 COUNTRIES. THROUGH THIS PROGRAM, FSR COORDINATES CONTINUING EDUCATION EDUCATIONAL PROGRAMS FOR CLINICIANS INCLUDING THE FSR CLINICAL EDUCATION AND ENGAGEMENT SERIES, THE FSR JOURNAL CLUB, AND THE FSR CASE CONFERENCE PROGRAM, WHICH PROVIDE INSIGHTS THAT LEAD TO PRACTICE CHANGING BEHAVIOR BY ATTENDEES AND PARTICIPANTS. FSR IS NOW SUPPORTING REGIONAL CLINICAL EDUCATION MEETINGS THROUGH PROGRAM AND MARKETING SUPPORT TO REACH BEYOND EXPERTS TO THE POOL OF LOCAL PHYSICIANS AND ADVANCED PRACTITIONERS. 215975 0 0 FSR PATIENT SUPPORT AND EDUCATION - FSR PROVIDES EXTENSIVE SUPPORT TO PATIENT AND CAREGIVERS IMPACTED BY SARCOIDOSIS THROUGH INFORMATION & REFERRAL SERVICES, ASSISTANCE TO FINANCIAL RESOURCES, 1:1 PEER TO PEER PATIENT SUPPORT PROGRAM (PATIENT NAVIGATORS), NATIONAL VIRTUAL SUPPORT GROUP, AND LOCAL SUPPORT GROUPS AFFILIATED WITH THE FSR GLOBAL SARCOIDOSIS CLINIC ALLIANCE. FSR HOSTS WEBINARS, TOWN HALLS, PODCASTS, VIRTUAL SUMMITS, AND IN-PERSON EDUCATIONAL EVENTS TO PROVIDE PATIENTS AND FAMILY MEMBERS WITH EDUCATION FROM WORLD-RENOWNED SARCOIDOSIS EXPERTS. FSR WORKS WITH THE NIH, FDA, AND DOD TO ENSURE THE SARCOIDOSIS IS CONSIDERED IN ALL ASPECTS FOR FEDERAL RESEARCH AND DRUG DEVELOPMENT. FSR IS COMMITTED TO ENSURING CLINICAL TRIALS REPRESENT ALL IN OUR COMMUNITY AND HAS BEEN LEADING EFFORTS TO REDUCE BARRIERS TO CLINICAL TRIAL ACCESS, INCLUDING COVERAGE UNDER FMLA AND PAID TIME OFF. 2865533 1 1 0 0 0 0 0 0 1 0 0 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 36 0 1 20 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 0 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 IL X X PORTE BROWN 8479561040 845 OAKTON ST ELK GROVE VILLAGE IL 60007 MARY COBB PRESIDENT 10.00 X X 0 0 0 CALVIN HARRIS TREASURER 5.00 X X 0 0 0 JOEL ROSEN SECRETARY 5.00 X X 0 0 0 JOHN CARLIN DIRECTOR 1.00 X 0 0 0 YVETTE C COZIER DIRECTOR 1.00 X 0 0 0 MOLLY FLICK DIRECTOR 1.00 X 0 0 0 EMERSON RANDY HALL JR DIRECTOR 1.00 X 0 0 0 MICHAEL KLINGHER DIRECTOR 1.00 X 0 0 0 JOAN LEVY DIRECTOR 1.00 X 0 0 0 CRAIG LIPSET DIRECTOR 1.00 X 0 0 0 JOHN MOCKOVCIAK DIRECTOR 1.00 X 0 0 0 LOUISE M PERKINS DIRECTOR 1.00 X 0 0 0 JEFFREY RAICH DIRECTOR 1.00 X 0 0 0 LESLIE SERCHUCK DIRECTOR 1.00 X 0 0 0 MARY MCGOWAN PRESIDENT & CEO 40.00 X 297500 0 27594 TRICHA SHIVAS CHIEF OF STAFF AND STRATEGY 40.00 X 248750 0 23963 DAVID FISCHER DIRECTOR OF OPERATIONS 40.00 X 103220 0 4581 ELISE HOOVER VP OF RESEARCH 40.00 X 150067 0 12631 799537 0 68769 0 0 1 0 0 172341 148000 3664692 3489 3985033 PROGRAM SERVICE FEES 900099 85903 85903 PATIENT EVENTS 900099 11364 11364 97267 518767 518767 5046765 4847999 198766 198766 198766 5000 148000 154900 -149900 -149900 MISCELLANEOUS INCOME 900099 12125 12125 12125 4662058 97267 0 579758 476000 476000 399600 399600 597807 425788 103624 68395 956777 681464 165848 109465 25096 17875 4350 2871 74212 52857 12864 8491 118489 84394 20539 13556 5248 56 5192 102954 1097 101857 46942 46942 299818 237454 56953 5411 16868 16059 809 107810 57631 32562 17617 146635 66656 60170 19809 30696 30696 85103 69083 14316 1704 65715 63363 1085 1267 7128 1188 5862 78 RESEARCH PROGRAMS 139691 127284 6929 5478 HONORARIUMS 61506 61506 DUES AND SUBSCRIPTIONS 30136 14451 7094 8591 CONTRACTS 11727 11727 5000 5000 3810958 2865533 681883 263542 759559 4722970 187301 347834 98186 24419 66514 39450 0 0 0 0 16071598 13658708 17183158 18793381 321294 29187 845304 1077341 5833 0 0 970 1172431 1107498 X 14502618 16582058 1508109 1103825 16010727 17685883 17183158 18793381 851100 824056 0 X X 0 1 X 1 0 X 1943444 1461209 2331449 13025070 3985033 22746205 1943444 1461209 2331449 13025070 3985033 22746205 13478188 9268017 154644 119287 143978 388899 518767 1325575 320 1375 6232 4068 12125 24120 24095900 986851 0.38460 0.39840 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2021 AMOUNT: $ 320. 2022 AMOUNT: $ 1,375. 2023 AMOUNT: $ 6,232. 2024 AMOUNT: $ 4,068. 2025 AMOUNT: $ 12,125. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 X 0 X 5610731 824056 16659 154900 995615 4615116 46942 46942 4662058 3935575 16659 154900 171559 3764016 46942 46942 3810958 PART IV, LINE 2B: THE ESCROW IS DUE TO CARD TESTING THAT WAS CONDUCTED TO RALLYBOUND TO ENSURE THAT FSR COULD APPROPRIATELY REIMBURSE FUNDS THAT WERE INAPPROPRIATELY PROVIDED TO FSR. PART X, LINE 2: THE FOUNDATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER THE PROVISION OF SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. ACCOUNTING PRINCIPLES GENERALLY ACCEPTED IN THE UNITED STATES OF AMERICA REQUIRE MANAGEMENT TO EVALUATE TAX POSITIONS TAKEN BY THE ORGANIZATION AND RECOGNIZE A TAX LIABILITY IF THE FOUNDATION HAS TAKEN ANY UNCERTAIN POSITIONS THAT MORE LIKELY THAN NOT WOULD NOT BE SUSTAINED UPON EXAMINATION BY THE INTERNAL REVENUE SERVICE OR OTHER APPLICABLE TAXING AUTHORITIES. MANAGEMENT HAS ANALYZED TAX POSITIONS TAKEN BY THE FOUNDATION AND HAS CONCLUDED THAT THERE ARE NO UNCERTAIN POSITIONS TAKEN OR EXPECTED TO BE TAKEN AS OF DECEMBER 31, 2025. THUS, NO PROVISION FOR INCOME TAX HAS BEEN PROVIDED FOR IN THE FINANCIAL STATEMENTS. THE FOUNDATION'S FORMS 990, RETURN OF FOUNDATION EXEMPT FROM INCOME TAX, ARE SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THEY WERE FILED. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 154,900. PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 154,900. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS 399600 0 0 0 0 0 0 399600 0 399600 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH FELLOWSHIP 150000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH GRANT 99600 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH FELLOWSHIP 150000 WIRE TRANSFER 0 3 0 0 0 0 0 0 0 PART I, LINE 2: GRANTS MADE TO ORGANIZATIONS ARE MONITORED THROUGH REPORTS RECEIVED FROM THE GRANT RECIPIENTS INCLUDING FINANCIAL SPEND DOWN. GALA 153000 148000 5000 83113 42335 250 29202 153000 148000 5000 83113 42335 250 29202 154900 -149900 1 JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C3 100000 0 CARDIAC RESEARCH GRANT UNIVERSITY OF COLORADO DENVER 1201 LARIMER STREET DENVER CO 80204 846000555 501C3 150000 0 RESEARCH FELLOWSHIP UNIVERSITY OF ILLINOIS 1800 1ST STREET CHAMPAIGN IL 61820 376000511 501C3 100000 0 RESEARCH GRANT WASHINGTON UNIVERSITY SCHOOL OF MEDICINE 4921 PARKVIEW PLACE SAINT LOUIS MO 63130 431519670 501C3 100000 0 CARDIAC RESEARCH GRANT 4 0 PART I, LINE 2: FSR HAS A WELL DOCUMENTED, THOROUGH PROGRAM FOR SOLICITATING AND EVALUATING REQUESTS FOR RESEARCH AND RESEARCH FELLOWSHIP GRANTS. THE PROCESS IS OVERSEEN BY FSR'S SCIENTIFIC ADVISORY BOARD. THEIR EVALUATIONS OF RESEARCH APPLICATIONS AND RECOMMENDATIONS FOR FUNDING ARE PRESENTED TO THE FSR GOVERNING BOARD OF DIRECTORS WHICH DETERMINES WHICH REQUESTS WILL BE FUNDED. FOR ALL MULTIYEAR FUNDING, THE COMMITMENT BEYOND THE INITIAL YEAR(S) IS CONTINGENT UPON RECEIPT AND EVALUATION BY FSR OF A SATISFACTORY ANNUAL PROGRESS REPORT. FSR REQUIRES ONGOING REPORTING PROGRESS OF RECRUITMENT/ENROLLMENT IN RESEARCH STUDIES OVERSEEN BY FSR'S SCIENTIFIC ADVISORY BOARD CHAIR AND AD HOC GRANT REVIEW COMMITTEE. X X X X X X 0 0 0 0 0 0 0 0 0 MARY MCGOWAN PRESIDENT & CEO 282500 0 15000 0 0 0 13125 0 14469 0 325094 0 0 0 TRICHA SHIVAS CHIEF OF STAFF AND STRATEGY 218750 0 30000 0 0 0 10350 0 13613 0 272713 0 0 0 ELISE HOOVER VP OF RESEARCH 147067 0 3000 0 0 0 6430 0 6201 0 162698 0 0 0 FORM 990, PART III, LINE 2 1) BIOMARKER SUMMIT- BUILDING ON A COMPREHENSIVE, COMMUNITY-ENGAGED PROCESS TO DEVELOP FSR'S SARCOIDOSIS RESEARCH AGENDA (THE REPORT WHICH WAS FINALIZED IN 2025) TO GUIDE ITS FUNDING PRIORITIES AND LONG-TERM SCIENTIFIC STRATEGY, FSR HOSTED A MEETING OF WORLD-RENOWNED SARCOIDOSIS EXPERTS TO DEVELOP A INITIATE THE DISCUSSION OF HOW BIOMARKERS ARE DEFINED, THEIR PRIMARY PURPOSE, AND HOW THEY CAN ADVANCE CLINICAL OUTCOMES. THE GOAL OF THIS PROGRAM WAS TO CREATE A ROADMAP FOR THE DEVELOPMENT OF CONSENSUS-DEFINED BIOMARKERS WHICH WILL BE USED TO IMPROVE DIAGNOSIS, SCREENING, AND RESEARCH. 2) IN-PERSON FSR GLOBAL SARCOIDOSIS CLINIC ALLIANCE MEETING - THIS CONVENING OF NEARLY 30 SARCOIDOSIS CENTERS OFFERED THE OPPORTUNITY FOR CLINICIANS TO COME TOGETHER TO DISCUSS CLINICAL BEST PRACTICES AND STRATEGIES TO IMPROVE EVERY DAY CLINICAL CARES AND SUPPORT OF SARCOIDOSIS PATIENTS. 3) FSR SARC REGISTRY 10 YEAR REPORT - THIS GLOBAL, PATIENT-REPORTED OUTCOMES PROGRAM INCORPORATES DATES FROM 2015-2025. FOR A DECADE, THE FSR REGISTRY HAS GATHERED CRUCIAL INFORMATION FROM INDIVIDUALS LIVING WITH SARCOIDOSIS AROUND THE WORLD. THIS ONLINE PATIENT REGISTRY IS HELPING RESEARCHERS UNCOVER PATTERNS IN THE DISEASE AND IDENTIFY WAYS TO IMPROVE CARE AND QUALITY OF LIFE. 4) FSR SARCOIDOSIS VOICE OF THE PATIENT REPORT - THE FOUNDATION FOR SARCOIDOSIS RESEARCH HOSTED THE EXTERNALLY-LED PATIENT FOCUSED DRUG DEVELOPMENT (EL-PFDD) MEETING WITH THE US FOOD AND DRUG ADMINISTRATIONAN INTERACTIVE, VIRTUAL EVENT WHERE PATIENTS AND CAREGIVERS SHARED THEIR EXPERIENCES, UNMET NEEDS, AND TREATMENT PRIORITIES.THE RESULTING 50-PAGE VOICE OF THE PATIENT REPORT CAPTURES THESE INSIGHTS, REFLECTING THE REAL-WORLD IMPACT OF SARCOIDOSIS AND GUIDING FUTURE RESEARCH AND THERAPY DEVELOPMENT. THIS REPORT AMPLIFIES THE VOICES OF PATIENTS AND CAREGIVERS, PROVIDING VALUABLE PERSPECTIVE FOR HEALTHCARE PROVIDERS, RESEARCHERS, AND DRUG DEVELOPERS TO ENSURE THAT PATIENT NEEDS REMAIN AT THE CENTER OF PROGRESS. 5) FSR'S COALITION TO TRANSFORM CLINICAL TRIAL ENGAGEMENT LAUCHED THE CHAMPIONS FOR CHANGE PROGRAM, WHICH ASKS CORPORATE AMERICA TO PROVIDE AT LEAST 1 PAID DAY OFF TO SUPPORT THEIR EMPLOYEES PARTCIPATION IN CLINICAL TRIALS. THIS DISEASE AGNOSTIC EFFORT AIMS TO SHIFT THE CONVERSATION AROUND CLINICAL TRIALS FROM THE BEDSIDE TOWARD BEING A PART OF IDIVIDUALS OVERALL HEALTH BENEFITS. THROUGH THIS EFFORT FSR, ALONG WITH THE COALITION, HAS SECURED 60,000 EMPLOYEES ACCESS TO TIME OFF FOR CLINICA TRIALS. FORM 990, PART VI, SECTION A, LINE 4 THE INVESTMENT POLICY WAS CHANGED AND APPROVED AT THE DEC 2025 BOARD MEETING AND APPLIED IN 2026. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS DISTRIBUTED TO THE BOARD BEFORE BEING FILED. FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS REVIEWED AND SIGNED ON AN ANNUAL BASIS AS PART OF THE ORGANIZATION'S DUE DILIGENCE. FORM 990, PART VI, SECTION B, LINE 15A A COMPENSATION SURVEY ANALYSIS WAS COMPLETED BY JER FIRM AND PRESENTED TO THE BOARD. THE BOARD REVEIWED THE COMPENSATION SURVEY AND APPROVAL WAS GRANTED THROUGH EXECUTIVE COMMITTEE. THE CEO AND CSO REVIEW EVALUATIONS AND COMPENSATION, AND BONUSES ARE DETERMINED BY PERFORMANCE AND PERFORMANCE RATING. THE CEO AND CSO BONUSES AND RAISES ARE APPROVED BY THE BOARD AND BOARD EXECUTIVE COMMITTEE. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON WRITTEN REQUEST FOR THE SAME PERIOD OF DISCLOSURE AS SET FORTH IN IRC SECTION 6104(D). FORM 990, PART XII, LINE 2C: THE OVERSIGHT PROCESS IS UNCHANGED FROM THE PRIOR YEAR.