2021-11-12T09:13:11-06:00 2020-12-31 362239746 SASSETTI LLC 6611 W NORTH AVENUE OAK PARK IL 60302 990 2020-01-01 364378232 FOUNDATION FOR SARCOIDOSIS RESEARCH FOUN 3123410500 1820 W WEBSTER NO 304 CHICAGO IL 60614 MARY MCGOWAN CEO 7733288156 2021-11-10 1 MARY MCGOWAN XXX-XX-XXXX JAMES ROBBS P01266623 7083861433 2021-11-10 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z MARY MCGOWAN 1820 W WEBSTER NO 304 CHICAGO IL 60614 2527770 0 X WWW.STOPSARCOIDOSIS.ORG X 2000 IL DEDICATED TO IMPROVING CARE FOR SARCOIDSIS PATIENTS AND TO FINDING A CURE FOR THIS DISEASE. 12 12 12 120 0 0 1958614 1264681 110795 73522 113633 446799 -10890 470 2172152 1785472 1265548 343000 0 0 679930 575251 0 0 214031 721413 470946 2666891 1389197 -494739 396275 4488567 5212814 231043 508375 4257524 4704439 X THE FOUNDATION FOR SARCOIDOSIS RESEARCH IS THE NATION'S LEADING NONPROFIT ORGANIZATION DEDICATED TO FINDING A CURE FOR THIS DISEASE AND TO IMPROVING CARE FOR SARCOIDOSIS PATIENTS. SINCE ITS ESTABLISHMENT IN 2000, FSR HAS FOSTERED OVER $3 MILLION IN SARCOIDOSIS-SPECIFIC RESEARCH EFFORTS AND HAS WORKED DILIGENTLY TO PROVIDE RESOURCES TO THOUSANDS. 0 0 287507 EDUCATION AND AWARENESS - IN 2020, FSR AWARENESS AND EDUCATION PROGRAMS PROVIDED MATERIALS AND SUPPORT TO OVER 50,000 PATIENTS AND THEIR LOVED ONES. FSR EXPANDED ITS VOLUNTEER PATIENT ADVOCATE PROGRAM BY DEVELOPING A PATIENT NAVIGATOR PROGRAM TO PROVIDE NEWLY DIAGNOSED PATIENTS ONE-ON-ONE PEER SUPPORT. 28 PATIENT NAVIGATORS AND ADVOCATES ATTENDED A TWO-DAY TRAINING IN WASHINGTON, D.C. 72 PATIENT ADVOCATES PARTICIPATED ACROSS THE COUNTRY IN AWARENESS AND EDUCATION ACTIVITIES. PATIENT NAVIGATORS SUPPORTED 28 PATIENTS ONE-ON-ONE, WITH ALL NAVIGATEES REPORTING HIGH LEVELS OF SATISFACTION. FSR PIVOTED TO ALL VIRTUAL PROGRAMMING BEGINNING MARCH 2020. OVER 400 PATIENTS FROM AROUND THE GLOBE ATTENDED FSR'S TWO VIRTUAL PATIENT EDUCATION SUMMITS. OVER 200 SARCOIDOSIS PATIENTS JOINED FSR'S VIRTUAL 5K WALK/RUN, REPRESENTING 29 SATES. PATIENT ADVOCATES HOSTED VIRTUAL SUPPORT GROUPS, 44 COLLABORATIVE VIRTUAL MEETINGS WITHIN THEIR COMMUNITIES, SECURED 15 STATE AWARENESS PROCLAMATIONS, AND PRODUCED 25 PODCASTS WITH OVER 10K LISTENS. FSR'S COVID-19 RESPONSE INCLUDED IN-DEPTH EXPERT-LED WEBINAR ON THE PANDEMIC WITH OVER 275 LIVE ATTENDEES, AND MORE THAN 1300 VIEWS OF THE RECORDING. THE COVID-19 RESOURCE PAGE ON FSR'S WEBSITE RECEIVED OVER 100,000 VIEWS, PROVIDING PATIENTS WITH THE INFORMATION AND RESOURCES TO SUPPORT DECISION MAKING AND BEST PRACTICES. FSR'S MASK-UP CAMPAIGN ENCOURAGED THE SARCOIDOSIS COMMUNITY TO STAY SAFE BY WEARING A MASK, REACHING OVER 12,000 PEOPLE. 584296 343000 73522 RESEARCH - FSR'S SMALL GRANT PROGRAM FOCUSES ON AWARDING FUNDS TO NEW OR EARLY STAGE RESEARCH ON SARCOIDOSIS. FSR'S CLINICAL STUDIES NETWORK (CSN) AND SARCONNECT PROGRAMS CONTINUED TO ENGAGE AND PARTNER WITH PHARMACEUTICAL COMPANIES THROUGH PATIENT OUTREACH AND RECRUITMENT FOR LARGE MULTI- CENTER TRIALS. BOTH PROGRAMS HELP CARRY OUT MULTIPLE STUDIES WITH FOCUS IN CARDIAC AND PULMONARY SARCOIDOSIS. FSR CONTINUED GROWING THE PATIENT REGISTRY AND MADE SIGNIFICANT PROGRESS ON THE SCOUT ENDPOINTS PROJECT, IN ADDITION TO PROVIDING SERVICES AND SUPPORT TO ADVANCE SARCOIDOSIS RESEARCH AND THE MISSION OF THE ORGANIZATION. 871803 1 1 0 0 0 0 0 0 0 0 1 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 7 0 1 12 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 1 1 1 1 0 IL X MARY MCGOWAN 3123410500 1820 W WEBSTER SUITE 304 CHICAGO IL 60614 LOUISE M PERKINS PRESIDENT 10.00 X X 0 0 0 CRAIG LIPSET VICE PRESIDENT 5.00 X X 0 0 0 LOUIE HONDROS TREASURER 5.00 X X 0 0 0 KIRK ALLEN DIRECTOR 1.00 X 0 0 0 JIM DAVIS DIRECTOR 1.00 X 0 0 0 MARY ELLEN CARROLL DIRECTOR 1.00 X 0 0 0 MARY COBB DIRECTOR 1.00 X 0 0 0 LESLIE SERCHUCK DIRECTOR 1.00 X 0 0 0 AZMI NABULSI DIRECTOR 1.00 X 0 0 0 REV MICHAEL A WALROND JR DIRECTOR 1.00 X 0 0 0 READING WILSON DIRECTOR 1.00 X 0 0 0 ANDREA WILSON DIRECTOR 1.00 X 0 0 0 MARY MCGOWAN EXECUTIVE DIRECTOR 40.00 X 61250 0 0 61250 0 0 0 0 0 0 0 126900 1137781 1264681 RESEARCH FUND AND FACILITY MANGEM 900099 73522 73522 73522 89937 89937 1099160 742298 356862 356862 356862 MISCELLANEOUS INCOME 900099 470 470 470 1785472 73522 0 447269 X 343000 343000 61251 37363 9800 14088 454749 277397 72760 104592 16194 9878 2591 3725 43057 26265 6889 9903 165084 5896 151081 8107 2137 1154 513 470 71240 38470 17097 15673 51037 27560 12249 11228 3820 853 2967 2033 2033 10422 5628 2501 2293 7359 3974 1766 1619 SPECIAL EVENTS 63452 46863 16589 FEES AND LICENSES 55097 28193 14235 12669 POSTAGE AND PRINTING 23449 12662 5628 5159 TELEPHONE 9006 4864 2161 1981 6810 603 3239 2968 1389197 871803 303363 214031 323307 731824 688726 550352 69736 52095 34503 17641 3384140 3879033 57891 33964 4488567 5212814 52031 99880 25000 125000 154012 161492 0 122003 231043 508375 X 4257524 4704439 4257524 4704439 4488567 5212814 396275 71885 -21245 0 X 0 1 X 0 0 X 1369674 2065871 3812061 1958614 1137781 10344001 1369674 2065871 3812061 1958614 1137781 10344001 40000 27025 16000 34000 47062 164087 632316 1375440 2902945 1016431 725809 6652941 672316 1402465 2918945 1050431 772871 6817028 3526973 72434 53630 217975 113633 446799 904471 72434 53630 217975 113633 446799 904471 11027 5440 470 16937 1442108 2119501 4041063 2077687 1585050 11265409 0.31310 0.34620 0.08030 0.05620 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 22590 14221 8369 8284 3681 4603 38862 34193 4669 17641 COMMON STOCK AND EQUITY MUTUAL FUNDS 3305102 F FIXED INCOME MUTUAL FUNDS 573931 F 3879033 AGENCY FUNDS DUE 122003 122003 1836112 71885 71885 1764227 21245 21245 1785472 1389197 0 1389197 0 1389197 PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS DIRECT EXPENSE PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS DIRECT EXPENSE 1 STATE UNIVERSITY OF IOWA FOUNDATION PO BOX 4550 IOWA CITY IA 52244 420796760 501C3 RESEARCH UNIVERSITY OF CINCINNATI 2600 CLIFTON AVENUE CINCINNATI OH 45220 316000989 501C3 RESEARCH CLEVELAND CLINIC 6801 BRECKSVILLE RD INDEPENDENCE OH 44131 340714585 501C3 5000 RESEARCH NORTHWESTERN UNIVERSITY 633 CLARK ST EVANSTON IL 60208 362167817 501C3 RESEARCH UNIVERSITY OF IOWA 118 S CLINTON ST IOWA CITY IA 52242 426004813 501C3 RESEARCH THE OHIO STATE UNIVERSITY WEXNER MEDICAL CENTER 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501C3 RESEARCH OKLAHOMA MEDICAL RESEARCH FOUNDATION 825 NE 13TH ST OKLAHOMA CITY OK 73104 730580274 501C3 25000 RESEARCH VANDERBILT UNIVERSITY DEPT 1236 PO BOX 121236 DALLAS TX 75312 620476822 501C3 RESEARCH YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501C3 RESEARCH JOHN HOPKINS MEDICAL CENTER 600 N WOLFE ST BALTIMORE MD 21287 520595110 501C3 RESEARCH UNIVERSITY OF WASHINGTON 1959 NE PACIFIC ST SEATTLE WA 98195 966001537 501C3 RESEARCH ATS FOUNDATION 25 BROADWAY NEW YORK NY 10004 202138855 501C3 21000 RESEARCH NATIONAL JEWISH HEALTH 1400 JACKSON STREET DENVER CO 80206 742044647 501C3 250000 RESEARCH UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501C3 RESEARCH UNIVERSITY OF ILLINOIS 506 S WRIGHT ST URBANA IL 61801 376000511 501C3 RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 179 ASHLEY AVE CHARLESTON SC 29425 576000722 501C3 RESEARCH ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVE ALBANY NY 12208 141338310 501C3 RESEARCH THOMAS JEFFERSON UNIVERSITY 1020 WALNUT ST PHILADELPHIA PA 19107 231352651 501C3 RESEARCH AMERICAN LUNG ASSOCIATION 55 W WACKER DRIVE CHICGO IL 60601 131632524 501C3 40000 RESEARCH 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. FORM 990, PART VI, SECTION A, LINE 2 THE CHAIRWOMAN AND PRESIDENT ARE SPOUSES. FORM 990, PART VI, SECTION A, LINE 8B IN THE FUTURE, THE ORGANIZATION INTENDS TO KEEP FORMAL MINUTES OF THEIR SCIENTIFIC ADVISORY COMMITTEE. 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 15 THE BOARD OF DIRECTORS SHALL ANNUALLY REVIEW IN WRITING, THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AGAINST PERFORMANCE CRITERIA THAT ARE LINKED TO THE ORGANIZATION'S LONG-TERM PLAN. THE EXECUTIVE DIRECTOR 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 EXECUTIVE DIRECTOR'S COMPENSATION AND BENEFITS IN RELATIONSHIP TO INDUSTRY PRACTICES AND FEDERAL REQUIREMENTS. FORM 990, PART VI, SECTION C, LINE 18 ALL FORMS ARE AVAILABLE UPON REQUEST. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST STATEMENT AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART IX, LINE 11G OTHER: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 91,384. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 91,384. CONTRACT SERVICES: PROGRAM SERVICE EXPENSES 5,896. MANAGEMENT AND GENERAL EXPENSES 59,697. FUNDRAISING EXPENSES 8,107. TOTAL EXPENSES 73,700.