2020-06-26T08:54:13-05:00 2019-12-31 EISNERAMPER LLP 750 THIRD AVENUE NEW YORK NY 100172703 990 2019-01-01 133349872 HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC % ROSEMARY COLUCCIO HUNT 2122421968 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 LOUISE VETTER CEO 2122421968 2020-06-26 true WILLIAM EPSTEIN P01307171 2129498700 64.238.150.4 26505220201785000010 2020-06-26 P 22B74A587291ACCBBA5B55F2DBE97DBC81F88001 CA5EC38B8D73FB7D0121583D8AFE820998F90C30 2019 2020-09-23 17:36:50Z LOUISE VETTER 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 11336895 false 9201 X WWW.HDSA.ORG X 1986 NY HUNTINGTON'S DISEASE SOCIETY OF AMERICA, INC. is a HEALTH AND WELFARE ORGANIZATION DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 15 15 39 500 0 0 10105837 10888668 0 0 35271 27426 26892 101289 10168000 11017383 2390426 2129504 0 0 3608309 3985760 0 0 1490291 2735474 3077906 8734209 9193170 1433791 1824213 9438517 10968665 1892229 1616446 7546288 9352219 X HUNTINGTON'S DISEASE SOCIETY OF AMERICA, INC. IS A NATIONAL VOLUNTARY HEALTH AND WELFARE ORGANIZATION DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. false false 1753479 721480 RESEARCH - Supplies research as advised by its Scientific Advisory Board. The research projects are involved in finding cures and treatments for Huntington's disease. 2604825 1408024 PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 1089434 COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. 1694714 EDUCATION 1694714 7142452 true true false false false false false false false true true false false false true true true false false false false true false false true false false true false true false false false false false false false false true false false false false true false false false true X 95 0 39 true false false false false false true true false false false true false false false X 15 15 false false false false false false false true true false true true true true true true true true true true false 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 LOUISE VETTER CHIEF EXECUTIVE OFFICER 35.0 3.0 X 326226 0 56116 GEORGE YOHRLING Sr. Dir. Mission & Sci Affairs 35.0 3.0 X 226476 0 12882 NANCY RHODES Director of Field Dev & Oper. 35.0 3.0 X 167430 0 34062 Rosemary Coluccio Chief Operating Officer 35.0 3.0 X 173156 0 8354 CHRISTOPHER COSENTINO Director of Marketing & Comm. 35.0 3.0 X 131883 0 48087 DEBRA LOVECKY Dir of Program Serv & Advocacy 35.0 3.0 X 155152 0 23266 Jamison Skala Director, National Development 35.0 3.0 X 133289 0 8426 ARIK JOHNSON PSYD PAST CHAIR 6.0 3.0 X X 0 0 0 DANIEL VANDIVORT TREASURER 6.0 3.0 X X 0 0 0 VICTOR SUNG MD CHAIR-ELECT 6.0 3.0 X X 0 0 0 EJ GARNER CHAIR 6.0 3.0 X X 0 0 0 JENNIFER LEYTON SECRETARY 6.0 3.0 X X 0 0 0 GERALD A FRANCESE ES TRUSTEE 6.0 3.0 X 0 0 0 DANIEL BRENNAN TRUSTEE 6.0 3.0 X 0 0 0 STACY COEN TRUSTEE 6.0 3.0 X 0 0 0 KAMRAN ALAM TRUSTEE 6.0 3.0 X 0 0 0 TERESA SRAJER Trustee 6.0 3.0 X 0 0 0 JENNE COLER-DARK Trustee 6.0 3.0 X 0 0 0 BILL KLINE Trustee 6.0 3.0 X 0 0 0 LESLIE M THOMPSON PHD TRUSTEE 6.0 3.0 X 0 0 0 DONALD HIGGINS MD TRUSTEE 6.0 3.0 X 0 0 0 VICKY WHEELOCK MD TRUSTEE 6.0 3.0 X 0 0 0 1313612 0 191193 8 false true false BOSTON MARRIOTT COPLEY PLACE 110 HUNTINGTON AVE BOSTON MA 02116 VENUE 565475 JR GRAPHICS 56 ELIZABETH AVE ELMWOOD PARK NJ 07407 GRAPHIC DESIGN 233380 LIBSHAP REALTY CORP 125 PARK AVE 11TH FLR NEW YORK NY 10017 REALTY 292938 MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 HOSPITAL 212500 THORN RUN PARTNERS LLC 100 M ST SE WASHINGTON DC DC 20003 advocacy 120000 7 202842 1736820 2619075 6329931 282805 10888668 0 27014 27014 0 0 0 0 0 75768 75356 412 412 412 244156 1736820 244156 0 0 0 0 0 0 MISCELLANEOUS 900099 101289 101289 101289 11017383 101289 27426 1588039 1588039 0 541465 541465 0 0 0 0 0 563852 414981 56594 92277 2618728 1825636 197477 595615 101283 66995 9265 25023 450398 316439 36198 97761 251499 176697 20213 54589 0 688 688 59729 59729 0 0 1135 1135 625818 493793 83467 48558 0 76385 49339 7142 19904 0 0 279895 199850 40075 39970 0 0 541960 493309 9557 39094 0 0 31077 18638 6681 5758 46607 26297 12190 8120 PRINTING AND PUBLICATIONS 237170 164930 379 71861 PRIZES, GIFTS & AWARDS 526630 524422 122 2086 EQUIPMENT RENTAL 17649 11787 3229 2633 TELEPHONE 63381 42030 8664 12687 569782 187805 7622 374355 9193170 7142452 560427 1490291 0 0 7793068 7443343 1338533 1187716 0 0 0 0 0 0 0 0 0 0 158438 159116 415470 368293 27025 47177 113272 2069844 0 0 0 0 0 0 8181 61469 9438517 10968665 302067 366588 1447523 1088162 12678 34167 0 0 0 0 0 0 0 0 0 0 129961 127529 1892229 1616446 X 1820486 3953703 5725802 5398516 7546288 9352219 9438517 10968665 X 1824213 161 -18443 X false true X true false X 8464439 8562031 10235578 10105837 10888668 48256553 0 0 8464439 8562031 10235578 10105837 10888668 48256553 3167062 45089491 7436 11983 11333 32605 27014 90371 0 21507 5021 23362 26892 101289 178071 48524995 0.92920 0.93627 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 268506 455 268961 267431 1075 268506 264877 2554 267431 281881 -17004 264877 280466 1415 281881 0.92950 0.07050 false false 65856 54973 10883 332529 296235 36294 17085 17085 47177 0 DEFERRED RENT 118993 OBLIGATION UNDER CAPITAL LEASE 8536 127529 X 11800773 161 3402304 3402465 8398308 2619075 2619075 11017383 10157844 3583749 3583749 6574095 2619075 2619075 9193170 SCHEDULE D, PART V, LINE 4: ENDOWMENT: 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. SCHEDULE D, 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. SCHEDULE D, PART XI, LINE 2D & 4B: lINE 2D: TOTAL REVENUE FROM HDSA CHAPTERS OF ($3,402,304) LINE 4B: TOTAL PAYMENTS FROM HDSA CHAPTERS OF $2,169,075 SCHEDULE D, PART XII, LINE 2D: TOTAL EXPENSES FROM HDSA CHAPTERS ($3,565,306) LOSS ON UNCOLLECTIBLE ACCOUNTS (18,443) ------------ ($3,583,749) SCHEDULE D, PART XII, LINE 4B: TOTAL PAYMENTS FROM HDSA CHAPTERS OF $2,169,075 true Europe (Including Iceland and Greenland) Grantmaking 301465 North America Grantmaking 240000 541465 541465 North America MEDICAL RESEARCH 240000 wire Europe (Including Iceland and Greenland) medical research 240000 wire Europe (Including Iceland and Greenland) Medical research 61465 wire 3 false false false false false false SCHEDULE F, PART I, LINE 1: MAINTAINING RECORDS FOREIGN ACTIVITIES: THE SOCIETY REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM grantees' OFFICES. SCHEDULE F, PART I, LINE 3, COLUMN (F): AMOUNTS ARE REPORTED USING THE ACCRUAL METHOD OF ACCOUNTING. Walk 1033156 952449 80707 50618 14936 4236 1550 9367 Gala 207408 172663 34745 786 6050 22843 1875 3191 16 740412 611708 128704 7980 61101 18389 300 40934 1980976 1736820 244156 59384 82087 45468 3725 53492 244156 true Columbia University HD Center 630 West 168th street P S Unit 1 New York NY 10033 133948652 501(c)(3) 119940 Community Services Indiana University 980 Indiana Ave Indianapolis IN 46202 356001673 501(c)(3) 27038 Community Services Johns Hopkins 12529 Collections Center Drive Chicago IL 60693 520595110 501(c)(3) 35000 Community Services Ohio State University 395 W 12th Ave 7th Fl Columbus OH 43210 316025986 501(c)(3) 48150 Community Services Regents of the University of California Dept of Neurosciences 9500 Gilman MC 0662 LaJolla CA 92093 956006144 501(c)(3) 95360 Community Services Rush University Medical Center 1201 W Harrison St Ste 300 Chicago IL 60607 362174823 501(c)(3) 56275 Community Services Univ of California Davis Medi 4860 Y Street Suite 3700 Sacramento CA 95817 946036494 501(c)(3) 70000 Community Services University of South Florida 3802 Spectrum Blvd Suite 100 Tampa FL 33620 590879015 501(c)(3) 30900 Community Services University of Alabama 1720 7th Ave South SC 440 Birmingham AL 35233 630649108 501(c)(3) 43700 Community Services University of Rochester 601 Elmwood Avenue Box 673 Rochester NY 14642 161593456 501(c)(3) 42800 Community Services University of Virginia Department of Neurology PO Box 8 Charlottesville VA 22908 546001796 501(c)(3) 12500 Community Services University of Washington Department of Neurology Box 356465 Seattle WA 98195 431869208 170(c)(1) 58231 Community Services Washington University 660 S Euclid Ave Campus Box 8018 St Louis MO 63110 430653611 501(C)(3) 37500 Community services University of Pittsburgh Medical Center Forbes Tower 9th Fl Ste 9025 360 Pittsburgh PA 15213 232919472 501(c)(3) 35000 Community Services University of Iowa 1-305 MEDICAL EDUCATION BUILDING Iowa City IA 52242 426004813 170(c)(1) 35000 COMMUNITY SERVICES Massachusetts General Hospital MGH EAST BUILDING 114 SUITE 2001 114 6TH STREET CHARLESTOWN MA 021290000 043167352 501(c)(3) 97500 Community services ALBANY MEDICAL College 43 NEW SCOTLAND AVENUE MC-70 ALBANY NY 12208 141641730 501(c)(3) 35000 COMMUNITY SERVICES BETH ISRAEL DEACONESS MEDICAL 330 BROOKLINE AVE BOSTON MA 02215 042103881 501(c)(3) 35000 COMMUNITY SERVICES EMORY UNIVERSITY 1599 CLIFTON ROAD 4th fl WELSEY WOODS HEALTH CTR ATLANTA GA 30322 580566256 501(c)(3) 25750 COMMUNITY SERVICES OCHSNER CLINIC FOUNDATION 1514 JEFFERSON HIGHWAY NEW ORLEANS LA 70121 720502505 501(c)(3) 16200 COMMUNITY SERVICES OREGON HEALTH AND SCIENCE UNIV 3181 SW JAM JACKSON PARK ROAD OP32 PORTLAND OR 97239 931176109 Gov't 12500 COMMUNITY SERVICES UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER 6431 FANNIN SUITE 7044 HOUSTON TX 77030 741761309 501(c)(3) 35000 COMMUNITY SERVICES UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET ROOM P221 PHILADELPHIA PA 19104 231352685 501(c)(3) 35000 COMMUNITY SERVICES UNIVERSITY OF FLORIDA 123 GRINTER HALL UFIRST PRO 0004859 GAINESVILLE FL 32611 596002052 Other 20000 COMMUNITY SERVICES UNIVERSITY OF LOUISVILLE 500 SOUTH PRESETON STREET HSC-A ROOM 113 LOUISVILLE KY 40402 611014882 other 15000 COMMUNITY SERVICES UNIVERSITY OF NEBRASKA MEDICAL CENTER 988440 NEBRASKA MEDICAL CENTER OMAHA NE 68198 911858433 501(c)(3) 18025 COMMUNITY SERVICES UNIVERSITY OF UTAH 175 NORTH MEDICAL DRIVE EAST SALT LAKE CITY UT 84132 876000525 501(c)(3) 23000 COMMUNITY SERVICES UNIVERSITY OF VERMONT 1 SOUTH PROSPECT STREET ARNOLD 4 BURLINGTON VT 05401 030219309 501(c)(3) 20074 COMMUNITY SERVICES VANDERBILT UNIVERSITY MEDICAL CENTER DEPT 1236 PO BOX 121236 DALLAS TX 753121236 352528741 501(c)(3) 42250 COMMUNITY SERVICES VIRGINIA COMMONWEALTH UNIVERSITY 800 EAST LEIGHH ST POB 843039 RICHMOND VA 23284 546001758 501(c)(3) 20000 COMMUNITY SERVICES NORTHWESTERN UNIVERSITY 7120 N Lake Shore Drive Room 1119 Feinberg School of Medicine cHICAGO IL 60611 362167817 501(C)(3) 54328 COMMUNITY SERVICES Cleveland Clinic Foundation CNR 9500 Euclid Street S-31 CLEVELAND OH 44195 340714585 501(C)(3) 20600 COMMUNITY SERVICES Cole Neuroscience Clinic 2200 Sutherland Avenue Knoxville TN 37919 311626179 501(c)(3) 12000 Community Services Duke University 932 Morreene Road Room 2016 Durham NC 27705 560532129 501(c)(3) 35000 Community services Erlanger Health System 979 E Third Street Suite C830 Chattanooga TN 37373 581664027 501(c)(3) 14000 Community Services Mary Hitchcock Memorial Hospital One Medical Center Drive Lebanon NH 03766 020222140 501(c)(3) 10000 Community Services University of Mississippi Medical Center 2500 N State Street Jackson MS 39216 640938566 501(c)(3) 9300 Community Services University of South Alabama 307 University Blvd Bld AD 362 Mobile AL 36688 636065809 501(c)(3) 6400 Community Services Stanford Hospital & Clinics 300 Pasteur Dr MC 5255 Stanford CA 94305 941156365 501(c)(3) 15750 Community Services Wesley Neurology Clinic 8000 Centerview Parkway Suite 305 Cordova TN 38018 621499155 501(c)(3) 7107 Community Services The Regent of the University of California 675 Nelson Rising Lane Suite 201 San Francisco CA 94158 946036493 501(c)(3) 25750 Community Services University of Wisconsin - Madison 21 N Park Street Ste 6401 Madison WI 53715 390970416 501(c)(3) 15450 Community Services Hennepin Healthcare Research Institute 701 Park Ave Suite PP7700 Minneapolis MN 55415 411677920 501(c)(3) 37782 community services Movement Disorders Foundation 3924 S Niagara Way Dever CO 80237 271618835 501(c)(3) 35000 Medical research OSF MULTI-SPECIALITY GROUP 800 NE Glen Oak Ave perioa IL 61603 383852646 other 7500 Community Services Sanford Health PO BOX 2010 fargo ND 581220001 450226909 501(c)(3) 7500 COMMUNITY SERVICes Rectors & Visitors of University of Virginia 1001 Emmet Street North 2nd Fl Charlottesville VA 22903 546001796 501(c)(3) 42800 Community services University Neurology Inc 77 Goodell Street Suite 320 UB Downtown Gateway Bldg Buffalo NY 14203 161359213 501(c)(3) 12500 Community services University of California at Irvine 1 Medical Plaza Drive Irvine CA 92617 952540117 501(c)(3) 17500 Community services Veracity Neuroscience LLC 5050 Poplar Avenue Ste 511 Memphis TN 38137 832063396 Other 5923 Community services UT Health McGovern Medical School 6431 Fannin street MSB7112 houston TX 77030 746106357 501(c)(3) 12500 Medical Research 51 SCHEDULE I, PART I, LINE 1: MAINTAINING RECORDS FOR GRANT ACTIVITIES: THE ORGANIZATION REQUESTS SEMI-ANNUAL FINANCIAL REPORTS FROM recipients. X X X X false false false false false false false false false LOUISE VETTER CHIEF EXECUTIVE OFFICER 326226 0 0 0 0 0 14000 0 42116 0 382342 0 0 0 GEORGE YOHRLING Sr. Dir. Mission & Sci Affairs 226476 0 0 0 0 0 11441 0 1441 0 239358 0 0 0 NANCY RHODES Director of Field Dev & Oper. 167430 0 0 0 0 0 8864 0 25198 0 201492 0 0 0 DEBRA LOVECKY Dir of Program Serv & Advocacy 155152 0 0 0 0 0 8084 0 15182 0 178418 0 0 0 CHRISTOPHER COSENTINO Director of Marketing & Comm. 131883 0 0 0 0 0 7047 0 41040 0 179970 0 0 0 Rosemary Coluccio Chief Operating Officer 173156 0 0 0 0 0 0 0 8354 0 181510 0 0 0 SCHEDULE J, PART 1: COMPENSATION DETERMINATION: 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 19 75142 FMV X donated goods 873 207663 FMV false true true SCHEDULE M, LINE 32A: THE SOCIETY IS THE RECIPIENT OF PROCEEDS FROM THE SALES OF VEHICLES AND SECURITIES DONATIONS THROUGH UNRELATED INTERMEDIARY ORGANIZATIONS. PART III - PROGRAM SERVICES 4D: Education Provides information and education through publication and distribution of newsletters, brochures and science updates. FORM 990, PAGE 1, PART I, QUESTION 5, AND PAGE 5, PART V, QUESTION 2A: PAYROLL: 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 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 11B: REVIEW OF FORM 990: 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: CONFLICT OF INTEREST POLICY: OFFICERS AND TRUSTEES ARE REQUESTED TO ANNUALLY SIGN DOCUMENTATION. FORM 990, PART VI, SECTION B, LINE 15A AND 15B: OFFICER COMPENSATION: 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: GOVERNING DOCUMENTS: 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: OTHER CHANGES IN NET ASSETS: INCLUDES LOSS OF UNCOLLECTIBLE ACCOUNTS ($18,443) HUNTINGTON'S DISEASE SOCIETY OF AMERICA 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 900658125 PROGRAM SRVC NY 501(c)(3) 7 HDSA Nat'l false false true true false false false false false false false true false true true false false false false