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 900658125 HUNTINGTON'S DISEASE SOCIETY OF AMERICA GROUP HUNT 2122421968 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 AMY GRAY PRESIDENT AND CEO 2122421968 2026-06-18 1 WILLIAM EPSTEIN P01307171 2129498700 2025 2025-03-06 01:10:19Z AMY GRAY 505 EIGHTH AVENUE SUITE 1402 NY NY 10018 4181245 1 1 9201 X WWW.HDSA.ORG X 1986 NY SEE SCHEDULE O 14 14 39 500 0 0 3205417 3722802 0 0 0 244 234 26753 3205651 3749799 12638 27466 0 0 0 0 0 0 257297 3465041 3473139 3477679 3500605 -272028 249194 610639 866995 22163 29325 588476 837670 TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH. 0 0 2714135 27466 RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE. 113782 COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. 415116 PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 3243033 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 0 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 X 0 0 39 0 0 0 0 0 0 1 1 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 6464679864 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 JENNE COLER-DARK CHAIR 3.00 6.00 X X 0 0 0 ANGELA ALLEN CHAIR ELECT 3.00 6.00 X X 0 0 0 TERESA SRAJER PAST CHAIR 3.00 6.00 X X 0 0 0 JAY HUGHES SECRETARY 3.00 6.00 X X 0 0 0 CHRISTOPHER DECESARIS TREASURER 3.00 6.00 X X 0 0 0 JEFFREY BROWN TRUSTEE 3.00 6.00 X 0 0 0 MARK COE TRUSTEE 3.00 6.00 X 0 0 0 ERIN FURR-STIMMING MD TRUSTEE 3.00 6.00 X 0 0 0 BETH HOFFMAN TRUSTEE 3.00 6.00 X 0 0 0 JONATHAN KLEIN ESQ TRUSTEE 3.00 6.00 X 0 0 0 JAIME HATCHER-MARTIN MD TRUSTEE 3.00 6.00 X 0 0 0 MARA SIFRY TRUSTEE 3.00 6.00 X 0 0 0 AMBER SOUTHWELL PHD TRUSTEE 3.00 6.00 X 0 0 0 DOMINIQUE THOMAS TRUSTEE 3.00 6.00 X 0 0 0 AMY GRAY CHIEF EXECUTIVE OFFICER 3.00 35.00 X 333963 0 1018 ROSEMARY COLUCCIO CHIEF OPERATIONS OFF (THRU 6/13/25) 3.00 35.00 X 176343 0 17778 ARIK JOHNSON CHIEF MISSION OFFICER 3.00 35.00 X 237342 0 27290 DEBORAH BOYD REGIONAL DEVELOPMENT DIREC 3.00 35.00 X 135417 0 24253 REBECCA CHAN CONTROLLER 3.00 35.00 X 156410 0 48107 MYNELLY PEREZ-ORELLANA DIRECTOR, MARKETING & COMM. 3.00 35.00 X 123303 0 46070 JESSICA MARSOLEK ASSISTANT DIRECTOR, MISSIO 3.00 35.00 X 119589 0 23390 MELINDA JENSEN REGIONAL DEVELOPMENT OFFICER 3.00 35.00 X 108819 0 22206 1391186 0 210112 10 0 1 0 0 56658 2742964 923180 120159 3722802 244 244 431446 2742964 431446 0 MISCELLANEOUS 900099 26753 26753 26753 3749799 0 0 26997 X 27466 27466 398534 398049 275 210 14261 11605 2656 23299 23209 90 186954 180717 6237 2506219 2506219 300 300 891 348 543 PRIZES AND GIFTS 191663 71504 120159 BANK AND CREDIT CARD FE 67487 474 67013 PRINTING & PUBLICATIONS 39072 4910 34162 POSTAGE AND SHIPPING 20819 6032 14787 23640 12200 11440 3500605 3243033 275 257297 580653 836517 4500 24761 30053 19328 18903 725 425 610639 866995 21169 25772 994 3553 22163 29325 X 455277 740495 133199 97175 588476 837670 610639 866995 249194 0 X 0 1 X 1 0 X 2867098 3567726 3222635 3205417 3722802 16585678 2867098 3567726 3222635 3205417 3722802 16585678 16585678 28 244 272 89 74 29419 234 26753 56569 16642519 0.99660 0.99790 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - 2021 AMOUNT: $ 89. 2022 AMOUNT: $ 74. 2023 AMOUNT: $ 29,419. 2024 AMOUNT: $ 234. 2025 AMOUNT: $ 26,753. 19328 18903 425 425 X 12678617 3840 11431197 11435037 1243580 2506219 2506219 3749799 10655578 3840 9657352 9661192 994386 2506219 2506219 3500605 PART X, LINE 2: THE SOCIETY FOLLOWS THE PROVISIONS OF THE FASB'S 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: REVENUES FROM HDSA NATIONAL 11,431,197. PART XI, LINE 4B - OTHER ADJUSTMENTS: GRANT REVENUE FROM HDSA NATIONAL 2,506,219. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM HDSA NATIONAL 9,657,352. PART XII, LINE 4B - OTHER ADJUSTMENTS: GRANT EXPENSES FROM HDSA NATIONAL 2,506,219. WALKS 1418564 1326261 92303 1608 26785 13005 5395 45510 GALAS 977815 784168 193647 3323 13676 103793 16926 55931 16 778031 632535 145496 3822 98253 24659 3657 15103 3174410 2742964 431446 8753 138714 141457 25978 116544 431446 0 1 TRAVEL GRANTS 25 27466 EDUCATION PART I, LINE 2: CHAPTER CONVENTION TRAVEL GRANTS ARE AVAILABLE THROUGH LOCAL HDSA CHAPTER FUNDING. THESE GRANTS ARE AWARDED BY REQUEST AND ARE NOT BASED ON FINANCIAL NEED. EACH CHAPTER HAS A LOCAL COMMITTEE THAT REVIEWS APPLICATIONS AND DETERMINES GRANT RECIPIENTS. DECISIONS ARE GENERALLY BASED ON THE APPLICANT'S ESSAY, THEIR CONNECTION TO THE HD COMMUNITY, AND THE AMOUNT OF FUNDING AVAILABLE TO SUPPORT CONVENTION ATTENDANCE. X X X X 0 0 1 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 & COMM. 123303 0 0 0 0 0 6882 0 39188 0 169373 0 0 0 DEBORAH BOYD REGIONAL DEVELOPMENT DIREC 135417 0 0 0 0 0 6778 0 17475 0 159670 0 0 0 PART I, LINE 3 COMPENSATION PRACTICES - PAID BY RELATED ORGANIZATION: 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 PAYMENYS FOR TWO EMPLOYEES DURING 2025. X 0 0 SEE SUPPL. INFO X DONATED GOODS 758 120159 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 THE PROCEEDS OF SALES OF VEHICLE DONATIONS THROUGH AN 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 V, STATEMENTS REGARDING OTHER IRS FILINGS AND TAX COMPLIANCE LINE 1A, B, AND C THE FORMS 1096 AND RELATED FORMS 1099 ARE FILED BY THE NATIONAL ORGANIZATION UNDER EIN #13-3349872. THE GROUP RETURN FOR AFFILIATES DID NOT HAVE ANY REQUIREMENT TO FILE FORM 1096. LINES 2A AND B: THE NATIONAL OFFICE OF THE SOCIETY CURRENTLY EMPLOYS 39 INDIVIDUALS. PAYROLL AND BENEFITS ARE PROCESSED THROUGH A PROFESSIONAL EMPLOYER ORGANIZATION (PEO) WHICH FILES THE FORM W-3 ON THE NATIONAL OFFICE OF THE SOCIETY'S BEHALF UNDER THE PEO'S FEDERAL EIN#. THEREFORE THE SOCIETY DOES NOT FILE A FORM W-3. THERE ARE NO EMPLOYEES OF THE CHAPTER AFFILIATES. 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, PART VI, SECTION B, LINE 12C OFFICERS AND TRUSTEES ARE REQUESTED TO ANNUALLY SIGN DOCUMENTATION. FORM 990, PART VI, SECTION B, LINE 15 OFFICER COMPENSATION - PAID BY RELATED ORGANIZATION: 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 ORGANIZATION 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 IX, LINE 11G OTHER FEES: PROGRAM SERVICE EXPENSES 398,049. MANAGEMENT AND GENERAL EXPENSES 275. FUNDRAISING EXPENSES 210. TOTAL EXPENSES 398,534. FORM 90, PART IX, STATEMENT OF FUNCTIONAL EXPENSES, LINE 21: PAYMENTS TO AFFILIATES REPRESENT THE TOTAL AMOUNT PAID FROM THE CHAPTERS TO THE NATIONAL OFFICE. HUNTINGTON'S DISEASE SOCIETY OF AMERICA 505 EIGHTH AVENUE SUITE 1402 NEW YORK NY 10018 133349872 PROG SRVC NY 501(C)(3) LINE 7 N/A 0 0 1 0 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 0