2024-07-24T08:11:23-05:00 2023-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD SUITE 302 WESTBOROUGH MA 01581 990 2023-01-01 521762747 FSHD SOCIETY FSHD 7813016060 75 NORTH MAIN STREET 1073 RANDOLPH MA 02368 MARK A STONE CEO & PRESIDENT 7813016060 2024-07-24 1 MARK STONE 999009999 0 SANDRA M BROWN CPA P01614103 5088717178 2024-07-24 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z MARK A STONE 75 NORTH MAIN STREET 1073 RANDOLPH MA 02368 4555532 0 X WWW.FSHDSOCIETY.ORG X 1991 DC FIND TREATMENTS AND A CURE FOR FSHD WHILE EMPOWERING OUR FAMILIES 16 16 18 120 0 0 2930776 4106175 304466 157597 133904 149018 139774 42624 3508920 4455414 1062750 405429 0 0 2016652 2272182 0 0 529770 1633557 1633455 4712959 4311066 -1204039 144348 6079315 6421254 1400698 1406571 4678617 5014683 FIND TREATMENTS AND A CURE FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) WHILE EMPOWERING OUR FAMILIES. 0 0 2243096 405429 154374 RESEARCH THE SOCIETY SEEKS TO ACCELERATE RESEARCH TO EXPEDITE TREATMENTS AND A CURE FOR FSHD MUSCULAR DYSTROPHY. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION. 1104419 3223 PATIENT ADVOCACY AND EDUCATIONTHE SOCIETY SEEKS TO ENLARGE, ENGAGE, & EMPOWER AN ACTIVE GLOBAL COMMUNITY. THE FSHD SOCIETY'S PATIENT ADVOCACY AND EDUCATION PROGRAMS DIRECTLY BENEFIT PATIENTS AND THEIR FAMILIES BY CONNECTING FSHD MUSCULAR DYSTROPHY PATIENTS AND FAMILIES TO HEALTHCARE PROVIDERS, RESEARCH INSTITUTIONS, AND SUPPORT GROUPS, PROVIDING HIGH-QUALITY EDUCATIONAL MATERIALS, ORGANIZING EDUCATIONAL MEETINGS AND CONFERENCES, AND CREATING OPPORTUNITIES AND SUPPORT FOR ADVOCACY AND RAISING PUBLIC AWARENESS. 3347515 1 1 0 0 0 1 0 0 0 0 0 0 0 1 1 0 1 0 0 0 1 1 0 0 1 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 20 0 18 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 16 16 1 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 MA AK AR CA CO CT DC FL GA HI IL KS KY MD ME MI MN MO MS NH NJ NV NC ND NM NY OH OK OR PA RI SC TN UT VA WA WI WV AL X X X AGNES MESTRICH 7813016060 75 NORTH MAIN STREET 1073 RANDOLPH MA 02368 JAMES A CHIN SR CHAIRMAN 10.00 X X 0 0 0 HOWARD L CHABNER JD VICE CHAIRMAN 10.00 X X 0 0 0 CHRISTINE FORD SECRETARY 10.00 X X 0 0 0 ELLEN K HANNAN TREASURER 10.00 X X 0 0 0 AMY Z BEKIER BOARD MEMBER 10.00 X 0 0 0 STUART LAI BOARD MEMBER 1.00 X 0 0 0 DAVID RUBIN BOARD MEMBER 1.00 X 0 0 0 WILLIAM R LEWIS III MD BOARD MEMBER 1.00 X 0 0 0 MICHELLE HELEN MACKAY BOARD MEMBER 1.00 X 0 0 0 LEE FRANK KOLAKOWSKI PHD BOARD MEMBER 10.00 X 0 0 0 LINDA LAURELLO BOARD MEMBER 1.00 X 0 0 0 GEORGE POLLOCK JR BOARD MEMBER 10.00 X 0 0 0 NEIL ANDREW SOLOMON MD FACP BOARD MEMBER 1.00 X 0 0 0 MARIE MORRELL BOARD MEMBER 1.00 X 0 0 0 JACK GERBLICK BOARD MEMBER 1.00 X 0 0 0 BRUCE RYSKAMP BOARD MEMBER 1.00 X 0 0 0 MARK STONE CEO & PRESIDENT 40.00 X 170858 0 28703 LISA SCHIMMEL CFO 40.00 X 126407 0 34984 JAMSHID ARJOMAND CHIEF SCIENCE OFFICER 40.00 X 263780 0 29984 BETH JOHNSTON CHIEF COMMUNITY ENGAGEMENT 40.00 X 134896 0 15057 KENNETH ALEXANDER KAHTAVA CHIEF BUSINESS OFFICER 40.00 X 144706 0 36350 JUNE KINOSHITA SENIOR DIRECTOR OF RESEARC 40.00 X 102500 0 12975 AMANDA HILL DIRECTOR OF CLINICAL RESEARCH 40.00 X 107959 0 32308 1051106 0 190361 7 0 1 0 IQVIA INC 100 IMS DRIVE PARSIPPANY NJ 07054 DATA MANAGEMENT AND REGISTRY 300000 MARYNA KOLOCHAVINA NEHRINGSTR 33 BERLIN GM 14059 HEALTH ECONOMIC CONSULTANT 180820 2 4915 977405 3123855 4106175 CORPORATE SPONSORSHIPS 900099 94624 94624 RESEARCH MEETING REGIS 900099 55473 55473 CORPORATE PARTNERSHIPS 900099 7500 7500 157597 154284 154284 5266 -5266 -5266 -5266 134838 977405 94852 39986 39986 RETURN OF GRANT FUNDS 900099 1938 1938 OTHER INCOME 900099 700 700 2638 4455414 160235 0 189004 X 405429 405429 659921 433776 186204 39941 1225624 968471 51035 206118 240022 198923 -405 41504 146615 109002 17289 20324 26497 18594 7903 20000 20000 486381 406873 70809 8699 38281 31489 6792 41545 29754 4205 7586 148772 112268 14999 21505 364552 304056 23586 36910 158544 158544 11952 2700 9252 PRINTING 104391 58376 46015 BANK SERVICE CHARGES AN 98830 32442 10434 55954 RESEARCH PROJECTS 51754 51754 DONOR SOFTWARE AND DONO 38422 38422 43534 25064 18470 4311066 3347515 433781 529770 2715 3650917 3571287 162636 84086 58985 62502 1806777 2000664 150000 150000 250000 550000 6079315 6421254 72281 320525 1256408 982792 72009 103254 1400698 1406571 X 2724386 3828056 1954231 1186627 4678617 5014683 6079315 6421254 144348 191718 0 X 0 1 X 1 0 X 4942896 2272171 4546323 2930776 4106175 18798341 4942896 2272171 4546323 2930776 4106175 18798341 2185410 16612931 93131 72211 122027 98205 154284 539858 39986 39986 8454 527 348700 139774 2638 500093 19878278 1242099 0.83570 0.80300 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: STIMULUS/COVID CREDITS - 2021 AMOUNT: $ 313,636. RETURN OF GRANT FUNDS - 2019 AMOUNT: $ 7,779. 2021 AMOUNT: $ 34,640. 2022 AMOUNT: $ 139,274. 2023 AMOUNT: $ 1,938. OTHER INCOME - 2019 AMOUNT: $ 675. 2020 AMOUNT: $ 527. 2021 AMOUNT: $ 424. 2022 AMOUNT: $ 500. 2023 AMOUNT: $ 700. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 1734768 0 1 1 0 DEFERRED CLOUD COMPUTING COSTS 550000 550000 LONG-TERM DEFERRED COMPENSATION LIABILITY 103254 103254 4986359 191718 339227 530945 4455414 0 4455414 4650293 339227 339227 4311066 0 4311066 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS, RESEARCH CONFERENCE N/A 400843 MIDDLE EAST AND NORTH AFRICA - ALGERIA, BAHRAIN, DJIBOUTI, EGYPT, 0 0 GRANTS N/A 174700 0 0 0 0 0 0 575543 0 575543 MIDDLE EAST AND NORTH AFRICA - ALGERIA, BAHRAIN, DJIBOUTI, EGYPT, RESEARCH GRANT 174700 WIRE TRANSFER 0 N/A EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH GRANT 159303 WIRE TRANSFER 0 N/A EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 71426 WIRE TRANSFER 0 N/A 3 0 0 0 0 0 0 PART I, LINE 2: THE SOCIETY MAKES RESEARCH GRANTS TO ELIGIBLE APPLICANTS AFTER REQUESTS FOR RESEARCH FUNDING HAVE BEEN REVIEWED AND APPROVED BY THE SOCIETY'S SCIENTIFIC ADVISORY BOARD (SAB) AND, THEREAFTER, APPROVED BY THE SOCIETY'S BOARD OF DIRECTORS. THE SOCIETY ALSO PROVIDES OTHER ASSISTANCE TO RESEARCHERS AND TO PATIENTS PARTICIPATING IN RESEARCH, AND PROVIDES FUNDS FOR RESEARCH BIOMATERIALS. GRANTEES ARE REQUIRED TO SUBMIT PERIODIC PROGRESS REPORTS, WHICH ARE REVIEWED BY THE SAB AND THE SOCIETY'S SENIOR EXECUTIVES. WITH REGARD TO ASSISTANCE OTHER THAN RESEARCH GRANTS, THE RECIPIENT OF THE ASSISTANCE IS REQUIRED TO SUBMIT PERIODIC PROGRESS REPORTS OR OTHER WRITTEN DETAIL ABOUT THE USE OF THE FUNDS, AS DETERMINED BY THE SAB, BOARD OF DIRECTORS AND SENIOR EXECUTIVES. PEER TO PEER EVENTS 967551 889876 77675 31927 12595 5645 11756 12519 OTHER SPECIAL EVENTS 144692 87529 57163 1750 1039 2510 8391 2556 4164 1112243 977405 134838 1750 32966 15105 14036 14312 16683 94852 39986 X X X 1 0 0 0 0 0 0 0 0 JAMSHID ARJOMAND CHIEF SCIENCE OFFICER 263780 0 0 0 0 0 7260 0 22724 0 293764 0 0 0 MARK STONE CEO & PRESIDENT 170858 0 0 0 0 0 6840 0 21863 0 199561 0 0 0 KENNETH ALEXANDER KAHTAVA CHIEF BUSINESS OFFICER 144706 0 0 0 0 0 6095 0 30255 0 181056 0 0 0 LISA SCHIMMEL CFO 126407 0 0 0 0 0 5250 0 29734 0 161391 0 0 0 PART I, LINE 4A JAMSHID ARJOMAND - RECEIVED $82,500 IN SEVERANCE; PAID IN DECEMBER 2023 FORM 990, PART VI, SECTION A, LINE 2 BOARD MEMBERS JAMES CHIN AND CHRISTINE FORD ARE BROTHER-IN-LAW AND SISTER-IN-LAW. FORM 990, PART VI, SECTION B, LINE 11B THE BOARD OF DIRECTORS REVIEWS THE FORM 990 PRIOR TO ITS FILING. THE FORM 990 WAS THEN AUTHORIZED AND SIGNED BY THE ORGANIZATION'S PRESIDENT & CEO. FORM 990, PART VI, SECTION B, LINE 12C THE BOARD OF DIRECTORS REQUIRES AN ANNUAL DECLARATION FROM ALL BOARD MEMBERS AND SENIOR MANAGEMENT AS TO THE EXISTENCE AND DISCLOSURE OF ANY POTENTIAL CONFLICTS OF INTEREST. THE BOARD MEMBERS SIGN A DISCLOSURE STATEMENT. ANY POTENTIAL CONFLICTS ARE DISCUSSED BY THE DIS-INTERESTED BOARD MEMBERS, WHILE THE PARTY IN POTENTIAL CONFLICT IS REQUIRED TO LEAVE THE MEETING. BOARD MEETING MINUTES WILL DOCUMENT THE DISCUSSION AND DECISION-MAKING PROCESS. IN THE EVENT OF A POTENTIAL CONFLICT, PROCEDURES TO OBTAIN COMPETITIVE BIDS AND DILIGENCE ON FAIR MARKET VALUE WILL BE ESTABLISHED. FORM 990, PART VI, SECTION B, LINE 15 FSHD SOCIETY'S EXECUTIVE COMPENSATION PROGRAM IS ADMINISTERED BY THE BOARD OF DIRECTORS. THE BOARD IS RESPONSIBLE FOR ESTABLISHING AND MAINTAINING A COMPETITIVE COMPENSATION PROGRAM FOR THE KEY EXECUTIVES OF THE ORGANIZATION. THE BOARD MEETS AS NEEDED TO REVIEW THE COMPENSATION PROGRAM AND MAKE RECOMMENDATIONS FOR ANY CHANGES, AS APPROPRIATE. A PERFORMANCE EVALUATION IS CONDUCTED AND REVIEWED EACH YEAR AND IS INTENDED TO ENSURE THAT THE COMPENSATION PROGRAM FALLS WITHIN A REASONABLE RANGE OF COMPETITIVE PRACTICES FOR COMPARABLE POSITIONS AMONG SIMILARLY SITUATED ORGANIZATIONS. FOLLOWING THIS REVIEW, THE BOARD REVIEWS AND APPROVES, FOR SELECTED KEY EXECUTIVES, BASE SALARIES AND ANNUAL INCENTIVE OPPORTUNITY ADJUSTMENTS, AND OBJECTIVES AND GOALS FOR THE UPCOMING YEAR'S ANNUAL INCENTIVE PLAN. FORM 990, PART VI, SECTION C, LINE 19 UPON REQUEST, AVAILABLE ON ORGANIZATION'S WEBSITE AND THROUGH GUIDESTAR WEBSITE. FORM 990, PART IX, LINE 11G CONSULTANTS AND PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 406,873. MANAGEMENT AND GENERAL EXPENSES 70,809. FUNDRAISING EXPENSES 8,699. TOTAL EXPENSES 486,381.