2023-05-16T12:56:19-05:00 2022-12-31 871353108 EISNER ADVISORY GROUP LLC 733 THIRD AVENUE NEW YORK NY 100172703 990 2022-01-01 133349872 HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC HUNT 2122421968 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 LOUISE VETTER CEO 2122421968 2023-05-15 1 LOUISE VETTER 999009999 0 WILLIAM EPSTEIN P01307171 2129498700 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z LOUISE VETTER 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 11768085 0 9201 X WWW.HDSA.ORG X 1986 NY DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 19 19 34 500 0 0 12104482 10470080 0 0 8112 29528 87558 210357 12200152 10709965 2852461 2936064 0 0 3647870 3816774 0 0 1711442 1444780 2665264 7945111 9418102 4255041 1291863 15786342 17419711 1883279 2232998 13903063 15186713 X HUNTINGTON'S DISEASE SOCIETY OF AMERICA, INC. IS A NATIONAL VOLUNTARY HEALTH AND WELFARE ORGAIZATION DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 0 0 1518326 934664 RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE. 3012942 1873349 PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 790239 COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. 1592272 128051 EDUCATION PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION AND DISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES 1592272 128051 6913779 1 1 0 0 0 0 0 0 0 1 1 0 0 0 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 85 0 34 1 0 0 0 0 0 1 1 0 0 0 1 0 0 0 X 19 19 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 ROSEMARY COLUCCIO 2122421968 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 VICTOR SUNG MD CHAIR 6.00 3.00 X X 0 0 0 TERESA SRAJER CHAIR-ELECT 6.00 3.00 X X 0 0 0 KAMRAN ALAM TREASURER 6.00 3.00 X X 0 0 0 JENNE COLER-DARK SECRETARY 6.00 3.00 X X 0 0 0 EJ GARNER PAST CHAIR 6.00 3.00 X X 0 0 0 ANGELA ALLEN TRUSTEE 6.00 3.00 X 0 0 0 DANIEL BRENNAN TRUSTEE 6.00 3.00 X 0 0 0 JEFF CARROLL TRUSTEE 6.00 3.00 X 0 0 0 MARK COE TRUSTEE 6.00 3.00 X 0 0 0 STACY COEN TRUSTEE 6.00 3.00 X 0 0 0 WENDY ERLER 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 JAY HUGHES TRUSTEE 6.00 3.00 X 0 0 0 JONATHAN KLEIN ESQ TRUSTEE 6.00 3.00 X 0 0 0 KELSEY PORTER TRUSTEE 6.00 3.00 X 0 0 0 DOMINIQUE THOMAS TRUSTEE 6.00 3.00 X 0 0 0 LESLIE M THOMPSON PHD TRUSTEE 6.00 3.00 X 0 0 0 VICKI WHEELOCK MD TRUSTEE 6.00 3.00 X 0 0 0 LOUISE VETTER CHIEF EXECUTIVE OFFICER 35.00 3.00 X 349249 0 52699 ROSEMARY COLUCCIO CHIEF OPERATIONS OFFICER 35.00 3.00 X 249757 0 26305 ARIK JOHNSON CHIEF MISSION OFFICER 35.00 3.00 X 195400 0 2714 JAMISON SKALA DIRECTOR, NATIONAL DEVELOP 35.00 3.00 X 165915 0 11985 DEBRA LOVECKY DIRECTOR OF EDUCATION PROG 35.00 3.00 X 161407 0 22964 CHRISTOPHER COSENTINO DIRECTOR OF MARKETING & CO 35.00 3.00 X 143417 0 37591 DEBORAH BOYD REGIONAL DEVELOPMENT DIREC 35.00 3.00 X 113225 0 18592 REBECCA CHAN CONTROLLER 35.00 3.00 X 106797 0 36399 1485167 0 209249 8 0 1 0 ATLANTA MARRIOTT MARQUIS 265 PEACHTREE CENTER AVE NE ATLANTA GA 30303 CONVENTION 463025 LIBSHAP REALTY CORPORATION 125 PARK AVENUE 11TH FLOOR NEW YORK NY 10017 REALTY 312607 J&R GRAPHICS 56 ELIZABETH AVENUE ELMWOOD PARK NJ 07407 GRAPHIC DESIGN 121314 THORN RUN PARTNERS LLC 100 M STREET SE WASHINGTON DC 20003 ADVOCACY 120000 4 159323 1528078 3003678 5779001 356476 10470080 29874 29874 864397 864743 -346 -346 -346 193377 1528078 193377 0 RETURNED GRANTS 900099 121808 121808 OTHER INCOME 900099 88549 88549 210357 10709965 88549 0 151336 2561069 2561069 374995 374995 2982377 1837702 353741 790934 117667 73727 13579 30361 460585 277329 52957 130299 256145 161595 30442 64108 116238 116238 64481 64481 996 996 577439 406882 91036 79521 168116 124828 14350 28938 284948 197320 20970 66658 421886 377785 14226 29875 24601 16985 1827 5789 61668 41806 5632 14230 PRINTING AND PUBLICATIO 202016 126491 221 75304 EQUIPMENT RENTAL 163867 157529 1521 4817 POSTAGE AND SHIPPING 84722 20523 1412 62787 TELEPHONE 68347 48285 4815 15247 425939 108928 4437 312574 9418102 6913779 792881 1711442 10471074 11978915 2587776 605970 179906 182670 152115 135678 26209 16437 2503034 3920368 18343 715351 15786342 17419711 365180 453833 1364174 980273 50194 1200 103731 797692 1883279 2232998 X 10194125 11643008 3708938 3543705 13903063 15186713 15786342 17419711 1291863 -8213 0 X 0 1 X 1 0 X 10105837 10888668 8480494 12104482 10502410 52081891 10105837 10888668 8480494 12104482 10502410 52081891 2422774 49659117 32605 27014 23523 7224 29874 120240 26892 101289 81919 87558 210357 508015 52710146 0.94210 0.92960 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2018 AMOUNT: $ 26,892. 2019 AMOUNT: $ 101,289. 2020 AMOUNT: $ 81,919. 2021 AMOUNT: $ 87,558. 2022 AMOUNT: $ 88,549. RETURNED GRANTS - 2022 AMOUNT: $ 121,808. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 268745 2992 271737 268866 -121 268745 268961 -95 268866 268506 455 268961 267431 1075 268506 0.92000 0.08000 0 0 65856 64703 1153 69174 53890 15284 17085 17085 0 16437 LEASE LIABILITY 797692 797692 X 11297208 -8213 32330 3567800 3591917 7705291 996 3003678 3004674 10709965 10117032 32330 3671274 3703604 6413428 996 3003678 3004674 9418102 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 3,567,800. PART XI, LINE 4B - OTHER ADJUSTMENTS: TOTAL PAYMENTS FROM HDSA CHAPTERS 3,003,678. PART XII, LINE 2D - OTHER ADJUSTMENTS: TOTAL EXPENSES FROM HDSA CHAPTERS 3,671,274. PART XII, LINE 4B - OTHER ADJUSTMENTS: TOTAL PAYMENTS FROM HDSA CHAPTERS 3,003,678. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT MAKING 374995 0 0 0 0 0 0 374995 0 374995 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM MEDICAL RESEARCH 374995 0 3 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 0 0 LOUISE VETTER CHIEF EXECUTIVE OFFICER 349249 0 0 0 0 0 15250 0 37449 0 401948 0 0 0 ROSEMARY COLUCCIO CHIEF OPERATIONS OFFICER 249757 0 0 0 0 0 12667 0 13638 0 276062 0 0 0 ARIK JOHNSON CHIEF MISSION OFFICER 195400 0 0 0 0 0 1463 0 1251 0 198114 0 0 0 DEBRA LOVECKY DIRECTOR OF EDUCATION PROG 161407 0 0 0 0 0 8427 0 14537 0 184371 0 0 0 CHRISTOPHER COSENTINO DIRECTOR OF MARKETING & CO 143417 0 0 0 0 0 7534 0 30057 0 181008 0 0 0 JAMISON SKALA DIRECTOR, NATIONAL DEVELOP 165915 0 0 0 0 0 8574 0 3411 0 177900 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. X SEE SUPP INFO X 21 138173 COMPARABLE SALES X DONATED GOODS 537 218303 COMPARABLE SALES 0 1 1 PART I, COLUMN (B): THE NUMER 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 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 34 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. HUNTINGTON'S DISEASE SOCIETY OF AMERICA 505 EIGHTH AVENUE SUITE 902 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