2018-05-15T08:25:51-05:00 2017-12-31 EISNERAMPER LLP 750 THIRD AVENUE NEW YORK NY 100172703 990 2017-01-01 133349872 HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC % LOUISE VETTER HUNT 2122421968 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 LOUISE VETTER CEO 2122421968 2018-05-15 true CANDICE METH P01306891 2129498700 2017 2022-09-23 18:48:47Z LOUISE VETTER 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 10585104 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. 16 16 41 500 0 8562031 10235578 0 0 11868 15033 5021 23362 8578920 10273973 2330540 2104624 0 0 3234229 3351251 0 0 1051874 2476841 3171257 8041610 8627132 537310 1646841 6072984 8116312 1519710 1995828 4553274 6120484 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 1681389 974988 RESEARCH - Supplies research as advised by its Scientific Advisory Board. The research projects are involved in finding cures and treatments for Huntington's disease. 2419351 1129636 PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES. 920760 CHAPTER DEVELOPMENT - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES. 1531641 EDUCATION 1531641 6553141 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 96 0 true 41 true false false false false false true true false false false true false X 16 16 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 LOUISE VETTER 2122421968 505 EIGHTH AVENUE SUITE 902 NEW YORK NY 10018 JANG-HO CHA MD PHD PAST CHAIR 6.0 3.0 X X 0 0 0 DANIEL VANDIVORT TREASURER 6.0 3.0 X X 0 0 0 EJ GARNER CHAIR-ELECT 6.0 3.0 X X 0 0 0 JENNIFER LEYTON SECRETARY 6.0 3.0 X X 0 0 0 Arik Johnson PSYD CHAIR 6.0 3.0 X X 0 0 0 GERALD A FRANCESE ESQ 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 HUGH DE LOAYZA TRUSTEE 6.0 3.0 X 0 0 0 SAMUEL FRANK MD Trustee 6.0 3.0 X 0 0 0 MICHELLE GRAY PHD Trustee 6.0 3.0 X 0 0 0 BILL KLINE Trustee 6.0 3.0 X 0 0 0 ARVIND SREEDHARAN TRUSTEE 6.0 3.0 X 0 0 0 DONALD HIGGINS MD TRUSTEE 6.0 3.0 X 0 0 0 MICHAEL ROTH TRUSTEE 6.0 3.0 X 0 0 0 VICTOR SUNG MD TRUSTEE 6.0 3.0 X 0 0 0 Louise Vetter Chief Executive Officer 35.0 3.0 X 280311 0 48876 Nadene Alleyne Director of Finance & Admin 35.0 3.0 X 140660 0 40367 George Yohrling Dir. of Med.& Scientific Aff 35.0 3.0 X 190751 0 20384 Nancy Rhodes Director of Field Dev & Oper. 35.0 3.0 X 144484 0 28290 Debra Lovecky Director of Prog Serv & Advoca 35.0 3.0 X 136974 0 19287 Christopher Cosentino Director of Marketing & Comm. 35.0 3.0 X 102556 0 37747 995736 0 194951 6 false true false RENAISSANCE SCHAUMBURG CONVENTION C 1551 Thoreau Dr N SCHAUMBURG IL 60173 HOTEL 427063 LIBSHAP REALTY CORPORATION 1740 Broadway 200 NEW YORK NY 10019 RENT 272431 2 267575 1983049 2598624 5386330 289652 10235578 0 11333 11333 0 0 0 0 0 33557 29857 3700 3700 3700 281274 1983049 281274 0 0 0 0 0 0 MISCELLANEOUS 900099 23362 23362 23362 10273973 23362 15033 1622918 1622918 0 481706 481706 0 420971 307309 42097 71565 0 2125256 1551757 229957 343542 107164 78230 10716 18218 475831 347357 47583 80891 222029 162081 22203 37745 0 350 350 65370 33580 23395 8395 0 0 0 686951 513114 163881 9956 0 173717 36274 84562 52881 0 0 270627 180418 45105 45104 0 0 535772 459052 64306 12414 0 0 11551 8434 1234 1883 44064 908 42906 250 PRINTING AND PUBLICATIONS 194451 81562 49844 63045 PRIZES, GIFTS & AWARDS 563929 458704 3626 101599 EQUIPMENT RENTAL 25574 16699 6239 2636 TELEPHONE 66562 34772 20632 11158 532339 178266 163481 190592 8627132 6553141 1022117 1051874 0 0 4495719 5815565 905233 1639252 0 0 0 0 0 0 0 0 0 0 129720 135559 389863 340152 46154 49711 496158 476225 0 0 0 0 0 0 0 0 6072984 8116312 359940 376449 1032367 1415064 12954 78782 0 0 0 0 0 0 0 0 0 0 114449 125533 1519710 1995828 X 930538 1319303 3372736 4551181 250000 250000 4553274 6120484 6072984 8116312 X 1646841 369 -80000 X false true X true false X 7152478 7706642 8464439 8562031 10235578 42121168 0 0 7152478 7706642 8464439 8562031 10235578 42121168 2667702 39453466 2524 7436 11983 11333 33276 0 22576 25757 21507 5021 23362 98223 42252667 0.93375 0.92869 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 264877 2554 267431 281881 -17004 264877 280466 1415 281881 278372 2094 280466 276790 1582 278372 0.93480 0.06520 false false 64105 45296 18809 298786 277771 21015 26972 17085 9887 49711 0 DEFERRED RENT 108034 OBLIGATION UNDER CAPITAL LEASE 17499 125533 X 10812560 369 3136842 3137211 7675349 2598624 2598624 10273973 9466911 80000 3358403 3438403 6028508 2598624 2598624 8627132 SCHEDULE D, PART V, LINE 4: ENDOWMENT: The Society's endowment consists of donor-restricted funds established for research purposes. SCHEDULE D, PART XI, LINE 2D & 4B: lINE 2D: TOTAL REVENUE FROM HDSA CHAPTERS OF ($3,136,842) LINE 4B: TOTAL PAYMENTS FROM HDSA CHAPTERS OF $2,598,624 SCHEDULE D, PART XII, LINE 2D & 4B: lINE 2D: TOTAL EXPENSES FROM HDSA CHAPTERS ($3,358,403) BAD DEBT EXPENSE (80,000) --------- ($3,438,403) LINE 4B: TOTAL PAYMENTS FROM HDSA CHAPTERS OF $2,598,624 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. true North America Grantmaking N/A 240000 Europe (Including Iceland and Greenland) Grantmaking n/a 218707 South America Program Services n/a 22999 481706 481706 North America medical research 240000 wire Europe (Including Iceland and Greenland) medical research 68707 wire Europe (Including Iceland and Greenland) medical research 150000 wire South America Comm. service 22999 wire 4 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. WALKS 1159045 1090462 68583 59971 13397 3580 500 GALA 277567 247138 30429 855 7255 19394 2925 16 827711 645449 182262 22203 92811 55383 3000 2264323 1983049 281274 83029 113463 78357 6425 281274 true Colorado Neurological Institute 701 East Hampden AveSuite 330 Englewood CO 80113 841100975 501(c)(3) 30000 Community Services Columbia University HD Center 630 West 168th street P S Unit 1 New York NY 10033 133948652 501(c)(3) 42000 Community Services Indiana University 620 Union Drive room 618 Indianapolis IN 46202 356001673 501(c)(3) 26250 Community Services Johns Hopkins University 1101 E 33rd Street Suite D200 Baltimore MD 21218 520595110 501(c)(3) 25000 Community Services Minneapolis Medical Research F 701 Park Ave South Minneapolis MN 55415 411677920 501(c)(3) 46000 Community Services Ohio State University 1581 Dodd Drive 371 McCampbell Hal Columbus OH 43210 316025986 501(c)(3) 45000 Community Services Regents of the University of California Dept of Neurosciences 9500 Gilman MC 0662 LaJolla CA 92093 943067788 501(c)(3) 45000 Community Services Rush University Medical Center 1653 W Congress Parkway Chicago IL 60612 362174823 501(c)(3) 30000 Community Services Univ of California Davis Medi 4860 Y Street Suite 3700 Sacramento CA 95817 946036494 501(c)(3) 65000 Community Services University of South Florida 12901 Bruce B Downs Blvd MDC 55 Tampa FL 33612 590879015 501(c)(3) 30000 Community Services University of Alabama 1530 Third Avenue South Birmingham AL 35294 636005396 501(c)(3) 38500 Community Services University of California LA 1125 Murphy Hall 405 Hilgard Avenu Los Angeles CA 90095 956006143 501(c)(3) 42000 Community Services University of Rochester 1351 Mount Hope Ave Suite 220 Rochester NY 14620 161593456 501(c)(3) 40000 Community Services University of Virginia Department of Neurology PO Box 8 Charlottesville VA 22908 546001796 501(c)(3) 45000 Community Services University of Washington Department of Neurology Box 356465 Seattle WA 98195 431869208 501(c)(3) 50227 Community Services Washington University 660 S Euclid Ave Campus Box 8018 St Louis MO 63110 430653611 501(C)(3) 40000 Community services University of Pittsburgh Medical Center 200 Lothrop Street Pittsburgh PA 15213 232919472 501(c)(3) 30000 Community Services Duke University Duke University AR Lockbox PO Bo Charlotte NC 282601928 560532129 501(c)(3) 23000 MEDICAL RESEARCH University of Iowa Grant Account Office B5 Jessup Hal Audra Haddy Budget Dept Iowa City IA 52242 426004813 170(c)(1) 20000 COMMUNITY SERVICES California Institute of Technology 1200 E California Blvd MC-201-15 Pasadena CA 911250001 951643307 501(c)(3) 150000 Medical research Massachusetts General Hospital 114 16TH STREET MGH EAST BUILDING Suite 2001 CHARLESTOWN MA 02129 042697983 501(c)(3) 20000 Comm. Srvc / Med Research University of California Irvine 120 Theory Suite 200 Irvine CA 926971050 952226406 501(c)(3) 240000 Medical research ALBANY MEDICAL CENTER 43 NEW SCOTLAND AVENUE MC-70 ALBANY NY 12208 141338310 501(c)(3) 30000 COMMUNITY SERVICES BETH ISRAEL DEACONESS MEDICAL 330 BROOKLINE AVE BOSTON MA 02215 042103881 501(c)(3) 17500 COMMUNITY SERVICES EMORY UNIVERSITY 1841 CLIFTON ROAD ATLANTA GA 30329 580566256 501(c)(3) 23000 COMMNUNITY SERVICES GEORGETOWN MEDSTAR HOSPITAL 3800 RESEVOIR ROAD NW WASHINGTON DC 20007 530196603 501(c)(3) 25000 COMMUNITY SERVICES OCHSNER CLINIC FOUNDATION 1514 JEFFERSON HIGHWAY NEW ORLEANS LA 70121 720502505 501(c)(3) 10000 COMMUNITY SERVICES OREGON HEALTH AND SCIENCE UNIV 3181 SW JAM JACKSON PARK ROAD PORTLAND OR 97239 931176109 Gov't 9773 COMMUNITY SERVICES UNIVERSITY OF TEXAS HEALTH AND SCIENCE CENTER PO BOX 301418 DALLAS TX 753031418 741761309 501(c)(3) 23000 MEDICAL RESEARCH UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET ROOM P221 PHILADELPHIA PA 19104 231352685 501(c)(3) 20000 COMMUNITY SERVICES UNIVERSITY OF CALIFORNIA SAN FRANCISCO 675 NELSON RISING LANE NS 201 SAN FRANCISCO CA 94148 946036493 501(c)(3) 25000 COMMUNITY SERVICES UNIVERSITY OF COLORADO DENVER 90 BOX 910238 DENVER CO 80291 846000555 501(c)(3) 10000 COMMUNITY SERVICES UNIVERSITY OF FLORIDA 123 GRINTER HALL GAINESVILLE FL 32611 596002052 Other 10000 COMMUNITY SERVICES UNIVERSITY OF LOUiSVILLE 220 ABRAHAM FLEXNER WAY ROOM 113 LOUISVILLE KY 40202 611014882 other 10000 COMMUNITY SERVICES UNIVERSITY OF NEBRASKA MEDICAL CENTER 988440 NEBRASKA MEDICAL CENTER OMAHA NE 68198 911858433 501(c)(3) 10000 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 BURLINGTON VT 05401 030219309 501(c)(3) 10000 COMMUNITY SERVICES VANDERBILT UNIVERSITY MEDICAL CENTER DEPT 1236 PO BOX 121236 DALLAS TX 753121236 352528741 501(c)(3) 50000 COMMUNITY SERVICES VIRGINIA COMMONWEALTH UNIVERSITY 907 FLOYD AVE RICHMOND VA 23284 546001758 501(c)(3) 17500 COMMUNITY SERVICES University of Miami 1320 s dixie Hwy miami FL 33146 590624458 501(c)(3) 10000 COMMUNITY SERVICES University of Wisconsin 21 N Park St Suite 6401 madison WI 53715 391805963 other 15000 community services NORTHWESTERN UNIVERSITY 7120 N Lake Shore Drive Room 1119 Feinberg School of Medicine cHICAGO IL 60611 362167817 501(C)(3) 15000 COMMUNITY SERVICES Unveristy of Tennessee-Memphis Wesley Neurology Clinic 8000 Cente Suite 305 cORDOVA TN 38018 626001636 501(C)(3) 23000 community services University of Central Florida 6900 Lake Nona Blvd Orlando FL 328277407 592924021 501(c)(3) 93750 medical research University of Miami 1320 s dixie Hwy miami FL 33146 590624458 501(c)(3) 150000 medical research 40 5 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 280311 0 0 0 0 0 14696 0 34180 0 329187 0 0 0 Nadene Alleyne Director of Finance & Admin 140660 0 0 0 0 0 7689 0 32678 0 181027 0 0 0 George Yohrling Dir. of Med.& Scientific Aff 190751 0 0 0 0 0 9677 0 10707 0 211135 0 0 0 Nancy Rhodes Director of Field Dev & Oper. 144484 0 0 0 0 0 7817 0 20473 0 172774 0 0 0 Debra Lovecky Director of Prog Serv & Advoca 136974 0 0 0 0 0 7130 0 12157 0 156261 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 15 71892 FMV X donated goods & services 314 217760 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 41 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 BAD DEBT EXPENSE OF ($80,000) 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