2026-06-24T13:04:24-05:00 2025-12-31 871353108 EISNER ADVISORY GROUP LLC 733 THIRD AVENUE NEW YORK NY 100172703 990 2025-01-01 133349872 HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC HUNT 2122421968 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 AMY GRAY PRESIDENT AND CEO 2122421968 2026-06-23 1 WILLIAM EPSTEIN P01307171 2129498700 2025 2025-03-06 01:10:19Z AMY GRAY 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 14074843 0 9201 X WWW.HDSA.ORG X 1986 NY SEE SCHEDULE O 14 14 38 500 0 0 9823331 11378212 0 0 204685 278265 146072 -423954 10174088 11232523 3372058 2298001 0 0 4295537 4102983 0 0 1264528 3718078 3043924 11385673 9444908 -1211585 1787615 17255243 17930550 4612999 3514460 12642244 14416090 X TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH. 0 0 1178929 406772 RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE. 3175526 1862900 PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 966495 0 COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. 2073898 28329 EDUCATION PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION ANDDISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES 2073898 28329 7394848 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 X 100 0 38 1 0 0 0 0 0 1 1 0 0 0 1 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY X DAVID TICKER CFO 2122421968 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 JENNE COLER-DARK CHAIR 6.00 3.00 X X 0 0 0 ANGELA ALLEN CHAIR ELECT 6.00 3.00 X X 0 0 0 TERESA SRAJER PAST CHAIR 6.00 3.00 X X 0 0 0 JAY HUGHES SECRETARY 6.00 3.00 X X 0 0 0 CHRISTOPHER DECESARIS TREASURER 6.00 3.00 X X 0 0 0 JEFFREY BROWN TRUSTEE 6.00 3.00 X 0 0 0 MARK COE TRUSTEE 6.00 3.00 X 0 0 0 ERIN FURR-STIMMING MD TRUSTEE 6.00 3.00 X 0 0 0 BETH HOFFMAN TRUSTEE 6.00 3.00 X 0 0 0 JONATHAN KLEIN ESQ TRUSTEE 6.00 3.00 X 0 0 0 JAIME HATCHER-MARTIN MD TRUSTEE 6.00 3.00 X 0 0 0 MARA SIFRY TRUSTEE 6.00 3.00 X 0 0 0 AMBER SOUTHWELL PHD TRUSTEE 6.00 3.00 X 0 0 0 DOMINIQUE THOMAS TRUSTEE 6.00 3.00 X 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 35.00 3.00 X 333963 0 1018 ROSEMARY COLUCCIO CHIEF OPERATIONS OFF (THRU 6/13/25) 35.00 3.00 X 176343 0 17778 ARIK JOHNSON CHIEF MISSION OFFICER 35.00 3.00 X 237342 0 27290 DEBORAH BOYD REGIONAL DEVELOPMENT DIRECTOR 35.00 3.00 X 135417 0 24253 REBECCA CHAN CONTROLLER 35.00 3.00 X 156410 0 48107 MYNELLY PEREZ-ORELLANA DIRECTOR, MARKETING & COMMUNICATIONS 35.00 3.00 X 123303 0 46070 JESSICA MARSOLEK ASSISTANT DIRECTOR, MISSION PROGRAMS 35.00 3.00 X 119589 0 23390 MELINDA JENSEN REGIONAL DEVELOPMENT OFF, NE REGION 35.00 3.00 X 108819 0 22206 1391186 0 210112 10 0 1 0 JW MARRIOTT INDIANAPOLIS 10 S WEST ST INDIANAPOLIS IN 46204 EVENT SPACE FOR CONVENTION 522360 LIBSHAP REALTY CORPORATION 125 PARK AVENUE 11TH FLOOR NEW YORK NY 10017 REALTY 330421 J&R GRAPHICS 56 ELIZABETH AVENUE ELMWOOD PARK NJ 07407 PRINTING 164341 THORN RUN PARTNERS LLC 100 M ST SE WASHINGTON DC 20003 GOVERNMENT AFFAIRS FIRM 120000 TEN EVENTS INC 1170 WHEELER WAY LANGHORNE PA 19047 AV RENTAL FOR CONVENTION 118633 7 192493 1517554 2506219 7161946 996357 11378212 215522 215522 2708197 2645454 62743 62743 62743 196866 1517554 196866 0 RETURNED GRANTS 900099 87491 87491 OTHER INCOME 900099 32150 32150 LOSS ON DISPOSAL OF WE 900099 -543595 -543595 -423954 11232523 32150 0 -177839 2205482 2205482 92519 92519 747738 402179 84897 260662 2434202 1812300 288694 333208 61301 24194 14329 22778 712167 558618 59294 94255 147575 58313 34362 54900 25713 25713 77087 77087 30000 30000 20300 20300 872704 668387 76389 127928 85919 71881 3502 10536 134199 94742 21953 17504 384855 288805 24819 71231 694697 636011 5798 52888 34521 25439 2239 6843 56434 42095 3705 10634 PRINTING & PUBLICATIONS 169661 115031 226 54404 EQUIPMENT RENTAL 137371 132286 1314 3771 POSTAGE & SHIPPING 85860 23267 3031 59562 BANK & CREDIT CARD FEES 67503 6081 2650 58772 167100 107218 35230 24652 9444908 7394848 785532 1264528 6828582 6394080 1562741 2224412 227146 237538 246376 116136 162180 130240 5503140 6744523 2971454 2199757 17255243 17930550 380905 296141 1747581 929705 21342 26500 2463171 2262114 4612999 3514460 X 9322635 12103035 3319609 2313055 12642244 14416090 17255243 17930550 X 1787615 14227 -27996 X 0 1 X 1 0 X 12104482 10502410 9341469 9823331 11378212 53149904 12104482 10502410 9341469 9823331 11378212 53149904 2745519 50404385 7224 29874 148456 149434 215522 550510 87558 210357 344165 146072 -423954 364198 54064612 0.93230 0.92450 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2021 AMOUNT: $ 87,558. 2022 AMOUNT: $ 88,549. 2023 AMOUNT: $ 94,300. 2024 AMOUNT: $ 32,415. 2025 AMOUNT: $ 32,150. RETURNED GRANTS - 2022 AMOUNT: $ 121,808. 2023 AMOUNT: $ 48,944. 2024 AMOUNT: $ 113,657. 2025 AMOUNT: $ 87,491. PRIOR YEAR RESCINDED GRANT - 2023 AMOUNT: $ 140,000. GAIN ON LEASE MODIFICATION - 2023 AMOUNT: $ 60,921. LOSS ON DISPOSAL OF WEBSITE COSTS - 2025 AMOUNT: $ -543,595. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 1 0 0 1 30000 0 0 30000 0 PART II-B, LINE 1: HDSA SEEKS TO IMPROVE THE LIVES OF MEMBERS OF OUR COMMUNITY LIVING WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES BY LOBBYING FOR FEDERAL LEGISLATION THAT WOULD HAVE A BENEFICIAL IMPACT ON AFFORDABILITY, ACCESS TO CARE, AND INCREASED RESEARCH FUNDING OF HUNTINGTON'S DISEASE 288136 17326 305462 283413 4723 288136 271737 11676 283413 268745 2992 271737 268866 -121 268745 0.81840 0.18160 0 0 113237 44756 68481 133139 71380 61759 130240 RIGHT-OF-USE ASSET 2197174 WEBSITE COSTS 2583 2199757 LEASE LIABILITY 2262114 2262114 X 12678617 14227 208588 3749798 3972613 8706004 20300 2506219 2526519 11232523 10655578 208588 3528601 3737189 6918389 20300 2506219 2526519 9444908 PART V, LINE 4: THE SOCIETY'S ENDOWMENT CONSISTS OF ONE DONOR-RESTRICTED FUND, ESTABLISHED BY THE DONOR FOR THE PURPOSE OF FUNDING MEDICAL RESEARCH IN THE FIELD OF HUNTINGTON'S DISEASE. PART X, LINE 2: THE SOCIETY FOLLOWS THE PROVISIONS OF THE FINANCIAL ACCOUNTING STANDARDS BOARD'S (THE "FASB") ACCOUNTING STANDARDS CODIFICATION ("ASC") TOPIC 740, INCOME TAXES, AS IT RELATES TO ACCOUNTING AND REPORTING FOR UNCERTAINTY IN INCOME TAXES. BECAUSE OF THE SOCIETY'S GENERAL TAX-EXEMPT STATUS, MANAGEMENT BELIEVES ASC TOPIC 740 HAS NOT HAD, AND IS NOT ANTICIPATED TO HAVE, A MATERIAL IMPACT ON THE SOCIETY'S FINANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM HDSA CHAPTERS 3,749,798. PART XI, LINE 4B - OTHER ADJUSTMENTS: TOTAL PAYMENTS FROM HDSA CHAPTERS 2,506,219. PART XII, LINE 2D - OTHER ADJUSTMENTS: TOTAL EXPENSES FROM HDSA CHAPTERS 3,500,605. LOSS ON UNCOLLECTIBLE AMOUNTS 27,996. PART XII, LINE 4B - OTHER ADJUSTMENTS: TOTAL PAYMENTS FROM HDSA CHAPTERS 2,506,219. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT MAKING 89999 NORTH AMERICA 0 0 GRANT MAKING 2520 0 0 0 0 0 0 92519 0 92519 EUROPE (INCLUDING ICELAND & GREENLAND) MEDICAL RESEARCH 89999 WIRE 0 1 0 0 0 0 0 0 PART I, LINE 2: THE SOCIETY REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM GRANTEES' OFFICES. PART I, LINE 3: AMOUNTS ARE REPORTED USING THE ACCRUAL METHOD OF ACCOUNTING. 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X X X X 0 0 0 0 0 0 0 1 0 AMY GRAY CHIEF EXECUTIVE OFFICER 333963 0 0 0 0 0 0 0 1018 0 334981 0 0 0 ARIK JOHNSON CHIEF MISSION OFFICER 216251 0 21091 0 0 0 11038 0 16252 0 264632 0 0 0 REBECCA CHAN CONTROLLER 146410 0 10000 0 0 0 7969 0 40138 0 204517 0 0 0 ROSEMARY COLUCCIO CHIEF OPERATIONS OFF (THRU 6/13/25) 176343 0 0 0 0 0 8901 0 8877 0 194121 0 0 0 MYNELLY PEREZ-ORELLANA DIRECTOR, MARKETING & COMMUNICATIONS 123303 0 0 0 0 0 6882 0 39188 0 169373 0 0 0 DEBORAH BOYD REGIONAL DEVELOPMENT DIRECTOR 135417 0 0 0 0 0 6778 0 17475 0 159670 0 0 0 PART I, LINE 3 COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION BY THE BOARD. PART I, LINE 7 THE BOARD OF TRUSTEES APPROVED NONFIXED BONUS PAYMENTS FOR TWO EMPLOYEES DURING 2025. X 0 0 SEE SUPP INFO X 15 966271 COMPARABLE SALES X DONATED GOODS 200 30086 COMPARABLE SALES 0 1 1 PART I, COLUMN (B): THE NUMBER OF CONTRIBUTIONS ARE BASED ON THE NUMBER OF ITEMS RECEIVED. PART I, LINE 32B: THE SOCIETY IS THE RECIPIENT OF PROCEEDS FROM THE SALES OF VEHICLES THROUGH AN UNRELATED INTERMEDIARY ORGANIZATION. FORM 990, PART I, LINE 1 TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH. FORM 990, PART VI, SECTION B, LINE 11B MANAGEMENT THOROUGHLY REVIEWS AND SUBSEQUENTLY PROVIDES AN ELECTRONIC DRAFT COPY OF FORM 990 TO THE GOVERNING BODY FOR REVIEW BEFORE FILING WITH THE IRS. FORM 990, STATEMENTS REGARDING OTHER IRS FILINGS AND TAX COMPLIANCE PART 1, QUESTION 5 AND PART V, QUESTION 2A: THE SOCIETY CURRENTLY EMPLOYS 38 INDIVIDUALS. PAYROLL AND BENEFITS ARE PROCESSED THROUGH A PROFESSIONAL EMPLOYER ORGANIZATION (PEO) WHICH FILES THE FORM W-3 ON THE SOCIETY'S BEHALF UNDER THE PEO'S FEDERAL EIN#. THEREFORE THE SOCIETY DOES NOT FILE A FORM W-3. FORM 990, PART VI, SECTION B, LINE 12C OFFICERS AND TRUSTEES ARE REQUESTED TO ANNUALLY SIGN DOCUMENTATION. FORM 990, PART VI, SECTION B, LINE 15 COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION OF THE BOARD. FORM 990, PART VI, SECTION C, LINE 19 THE SOCIETY MAKES ITS BY-LAWS, ARTICLES OF INCORPORATION, IRS FORM 1023, ANNUAL REPORTS, AUDITED FINANCIAL STATEMENTS, IRS FORM 990 DOCUMENTS, CONFLICT OF INTEREST POLICY AND PRIVACY POLICY AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART XI, LINE 9: LOSS ON UNCOLLECTIBLE AMOUNTS -27,996. HUNTINGTON'S DISEASE SOCIETY OF AMERICA 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 900658125 PROGRAM SRVC NY 501(C)(3) LINE 7 HDSA NAT'L 0 0 1 1 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 0