2024-11-05T10:40:56-06:00 2023-12-31 362239746 SASSETTI LLC 2107 SWIFT DRIVE SUITE 210 OAK BROOK IL 60523 990 2023-01-01 364378232 FOUNDATION FOR SARCOIDOSIS RESEARCH FOUN 3123410500 320 W OHIO ST 300 CHICAGO IL 60654 MARY COBB PRESIDENT 7733288156 2024-10-31 1 0 IZABELA POLUDNIAK P01959192 7083861433 2024-10-31 2023 2024-10-15 13:58:12Z MARY COBB 320 W OHIO ST 300 CHICAGO IL 60654 4886421 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 $6.5 MILLION IN SARCOIDOSIS SPECIFIC RESEARCH EFFORTS. 13 13 18 130 0 0 1291209 2411412 341425 252937 39590 -22783 1375 -67462 1673599 2574104 354750 323706 0 0 1049644 1217231 0 0 186645 623551 861499 2027945 2402436 -354346 171668 4929854 5742895 384856 455899 4544998 5286996 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 $6.5 MILLION IN SARCOIDOSIS SPECIFIC RESEARCH EFFORTS. 0 0 1256486 16206 PATIENT AND CLINICIAN SUPPORT AND PROGRAMMING:FSR PROVIDES PATIENTS WITH DIRECT SUPPORT THROUGH OUR PEER-LED TRAINED VOLUNTEER COMMUNITY GROUPS, SUPPORT GROUPS, OUR ONE-ONE-ONE PATIENT NAVIGATOR SUPPORT PROGRAM, AND COMMUNITY OUTREACH ACTIVITIES. FSR PROVIDES DIRECT PATIENT EDUCATION THROUGH FSR'S WEBINAR AND TOWN HALL EDUCATIONAL SERIES, FSR SARC FIGHTER PODCAST, AND MULTI-DAY VIRTUAL EDUCATIONAL SUMMIT CONSISTING OF 23 EDUCATIONAL SESSIONS FOR OVER 300 PATIENTS WORLD-WIDE. FSR HAS ALSO PROVIDED A SPECIFIC EMPHASIS ON IMPROVING DIVERSITY EQUITY AND INCLUSION IN SARCOIDOSIS DIAGNOSIS, CARE, AND INCREASING DIVERSITY IN CLINICAL TRIALS THROUGH OUR IGNORE NO MORE EFFORTS. FSR ALSO PROVIDES CLINICIAN EDUCATION AND SUPPORT THROUGH THE CLINICIAN EDUCATION AND ENGAGEMENT SERIES, PEER CASE REVIEWS, AND THE FSR JOURNAL CLUB. THESE PROGRAMS PROVIDE CLINICIANS WITH CONTINUING MEDICAL EDUCATION CREDITS AND FOSTER BEST PRACTICE SHARING AND OUTCOME IMPROVEMENT STRATEGIES. 409890 307500 FSR PROVIDES RESEARCH FUNDING THROUGH OUR FELLOWSHIP, CARDIAC GRANT, AND PILOT GRANT FUNDING PROGRAM. THROUGH THE FSR CLINICAL STUDIES NETWORK, FSR FUNDS AND FACILITATES A 12 SITE INTERNATIONAL STUDY SEEKING TO UNDERSTAND THE DIAGNOSIS OF CARDIAC SARCOIDOSIS. FSR HAS ALSO SIGNIFICANTLY INCREASED PARTICIPATION IN THE FSR PATIENT REPORTED OUTCOMES REGISTRY IN ORDER TO INCREASE UNDERSTANDING OF PATIENT'S LIVED EXPERIENCE WITH SARCOIDOSIS. 100891 263337 FSR WORKS DIRECTLY WITH INDUSTRY PARTNERS LEVERAGING THEIR EXPERTISE, CONTACTS, THE FSR PATIENT REPORTED OUTCOMES REGISTRY, AND ITS DATABASE IN SUPPORT OF ACADEMIC AND INDUSTRY SPONSORED RESEARCH EFFORTS. THROUGH THIS PROGRAM FSR HELPS TO REVIEW PROTOCOLS, CONNECT INDUSTRY WITH POSSIBLE INVESTIGATORS AND RESEARCH SITES, AND SUPPORT THE RECRUITMENT AND ENROLLMENT OF SARCOIDOSIS-RELATED INDUSTRY SPONSORED TRIALS. 1767267 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 1 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 9 0 1 18 1 0 0 0 0 0 1 1 0 0 0 0 X 13 13 0 0 0 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 LOUISE M PERKINS PRESIDENT 10.00 X X 0 0 0 CRAIG LIPSET VICE PRESIDENT 5.00 X X 0 0 0 MARY COBB SECRETARY 5.00 X X 0 0 0 MICHAEL KAPLAN TREASURER 5.00 X X 0 0 0 YVETTE C COZIER DIRECTOR 1.00 X 0 0 0 EMERSON RANDY HALL JR DIRECTOR 1.00 X 0 0 0 CALVIN HARRIS DIRECTOR 1.00 X 0 0 0 HEIDI W JUNK DIRECTOR 1.00 X 0 0 0 MICHAEL KLINGHER DIRECTOR 1.00 X 0 0 0 JEFFREY RAICH DIRECTOR 1.00 X 0 0 0 JOEL ROSEN DIRECTOR 1.00 X 0 0 0 LESLIE SERCHUCK DIRECTOR 1.00 X 0 0 0 REV MICHAEL A WALROND JR DIRECTOR 1.00 X 0 0 0 MARY MCGOWAN CEO 40.00 X 255000 0 14652 TRICHA SHIVAS CHIEF STRATEGY OFFICER 40.00 X 161000 0 12444 416000 0 27096 2 0 1 0 0 95000 124100 196935 1995377 63413 2411412 PROGRAM SERVICE FEES 541700 217830 217830 MEMBERSHIP DUES & ASSESSMENTS 900099 20070 20070 PATIENT EVENTS 541900 15037 15037 252937 143978 143978 2061394 2228155 -166761 -166761 -166761 6300 124100 84162 -77862 -77862 4168 0 4168 4168 MISCELLANEOUS INCOME 900099 6232 6232 6232 2574104 263337 0 -100645 282500 282500 16206 16206 25000 25000 416000 283655 93972 38373 620601 423164 140190 57247 964 657 218 89 98447 67127 22239 9081 81219 55380 18347 7492 77933 2969 74562 402 23533 23533 148908 121990 22013 4905 5430 5430 118273 70775 10380 37118 125884 91992 13602 20290 34821 23743 7866 3212 85836 58528 19390 7918 188105 188105 947 947 5601 3818 1265 518 RESEARCH PROGRAMS 46228 46228 2402436 1767267 448524 186645 X 127519 43357 0 84162 618781 959707 382943 322714 7284 70934 49489 45703 45649 1001 54 3856195 4403647 4929854 5742895 209856 142399 175000 313500 384856 455899 X 3345460 4205506 1199538 1081490 4544998 5286996 4929854 5742895 171668 570330 0 X X 0 1 X 1 0 X 1958614 1137781 1943444 1461209 2331449 8832497 1958614 1137781 1943444 1461209 2331449 8832497 3062457 5770040 113633 446799 154644 119287 143978 978341 5440 470 320 1375 6232 13837 9824675 696889 0.58730 0.50570 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2019 AMOUNT: $ 5,440. 2020 AMOUNT: $ 470. 2021 AMOUNT: $ 320. 2022 AMOUNT: $ 1,375. 2023 AMOUNT: $ 6,232. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6841 6787 54 38862 38862 0 54 X 3207676 570330 2613 84162 657105 2550571 23533 23533 2574104 2465678 2613 84162 86775 2378903 23533 23533 2402436 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, 2023. 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: SPECIAL EVENTS DIRECT EXPENSE 84,162. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS DIRECT EXPENSE 84,162. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 1 1 EDUCATION AND AWARENESS PROGRAMS EMPLOYEE DESIGNS AND IMPLEMENTS VOLUNTEER AND PATIENT EDUCATION PROGRAMMING. PRIMARILY IN U.S. 18196 1 1 0 0 1 1 18196 0 18196 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM FSR PILOT GRANT AWARED 25000 WIRE TRANSFER 0 0 0 0 0 0 0 SCHEDULE F, PART II GRANTS MADE TO ORGANIZATIONS ARE MONITORED THROUGH REPORTS RECEIVED FROM THE GRANT RECIPIENTS INCLUDING FINANCIAL SPEND DOWN. GALA 130400 124100 6300 14997 25949 43216 130400 124100 6300 14997 25949 43216 84162 -77862 1 AMERICAN THORACIC SOCIETY (ATS) 25 BROADWAY NEW YORK NY 10004 061548706 501C3 32500 0 RESEARCH DUKE UNIVERSITY 2200 W MAIN STREET DURHAM NC 27705 560532129 501C3 50000 0 RESEARCH JOHN HOPKINS MEDICAL CENTER 600 N WOLFE ST BALTIMORE MD 21287 520595110 501C3 50000 0 RESEARCH UNIVERSITY OF ILLINOIS CHICAGO 1200 W HARRISON ST CHAPEL HILL IL 60607 362177139 501C3 150000 0 RESEARCH FSR GLOBAL SARCOIDOSIS SUMMIT SCHOLARSHIP 79 5925 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 0 0 0 0 0 0 0 0 0 MARY MCGOWAN CEO 234000 0 21000 0 0 0 0 0 14652 0 269652 0 0 0 TRICHA SHIVAS CHIEF STRATEGY OFFICER 156000 0 5000 0 0 0 0 0 12444 0 173444 0 0 0 X 2 63413 FMV 0 0 0 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 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 THE BOARD OF DIRECTORS SHALL ANNUALLY REVIEW IN WRITING, THE PERFORMANCE OF THE CHIEF EXECUTIVE OFFICER (CEO) AGAINST PERFORMANCE CRITERIA THAT ARE LINKED TO THE ORGANIZATION'S LONG-TERM PLAN. THE CEO SHALL PARTICIPATE IN THE EVALUATION PROCESS AND REVIEWS, SIGNS AND RESPONDS TO THE EVALUATION BEFORE IT IS ENTERED INTO HIS OR HER RECORD. THE BOARD OF DIRECTORS SHALL ALSO REVIEW THE FAIRNESS OF THE CEO'S COMPENSATION AND BENEFITS IN RELATIONSHIP TO INDUSTRY PRACTICES AND FEDERAL REQUIREMENTS. 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 REQUEST. FORM 990, PART XII, LINE 2C: THIS PROCESS IS UNCHANGED FROM THE PRIOR YEAR.