2017-05-15T11:19:43-05:00 2016-12-31 042571780 ALEXANDER ARONSON FINNING & CO PC 21 EAST MAIN STREET WESTBOROUGH MA 01581 990 2016-01-01 237376197 HEREDITARY DISEASE FOUNDATION HERE 2129282121 3960 BROADWAY 6TH FLOOR NEW YORK NY 10032 MEGHAN DONALDSON CEO 2129282121 2017-05-15 1 JOHN BUCKLEY CPA P00830631 5083669100 2017-05-15 64.197.103.66 2017-05-15 10:08:52 ED P BC5926B0E490F04D1ABA71567B078B8614800D21 E389E89C54D8B2D0E67DFD5473BAB8CDEAF766EE 2016 2021-01-29 14:40:06Z MEGHAN DONALDSON 3960 BROADWAY 6TH FLOOR NEW YORK NY 10032 6351269 0 X HDFOUNDATION.ORG X 1968 CA TO FUND INNOVATIVE RESEARCH TOWARDS CURING HUNTINGTON'S DISEASE AND IMPACTING OTHER BRAIN DISORDERS. 17 16 5 1 0 0 1886920 2107686 0 0 539898 288736 -68646 -107089 2358172 2289333 793978 734444 0 0 640043 492947 0 0 167668 453123 821719 1887144 2049110 471028 240223 11110344 11731003 531930 565743 10578414 11165260 X TO FUND INNOVATIVE RESEARCH TOWARDS CURING HUNTINGTON'S DISEASE AND IMPACTING OTHER BRAIN DISORDERS. 0 0 1645884 734444 THE HEREDITARY DISEASE FOUNDATION WISHES TO CELEBRATE OUR UPCOMING 50TH BIRTHDAY BY MAKING EVEN MORE OF AN IMPACT TO DEVELOP NOVEL THERAPEUTICS AND CURES. WE ARE PUTTING IN PLACE STRATEGIES AND NEW GRANT FUNDING PROGRAMS TO MAXIMIZE OUR EFFECTIVENESS. WE HAVE BEEN FUNDING CATALYTIC AND PARADIGM-CHANGING RESEARCH SINCE OUR BIRTH - INCLUDING IDENTIFYING THE HUNTINGTON'S DISEASE MARKER IN 1983 AND THE HD GENE IN 1993, AND SUPPORTING GENE SILENCING APPROACHES SINCE 2002. WE WANT TO CONTINUE TO MAKE AN IMPACT BY FUNDING RESEARCH THAT PUSHES THE ENVELOPE. THE HEREDITARY DISEASE FOUNDATION PROVIDES FUNDING FOR RESEARCH THAT ADVANCES THE DISCOVERY AND DEVELOPMENT OF TREATMENTS FOR HUNTINGTON'S DISEASE AND OTHER BRAIN DISORDERS. WE ARE PASSIONATE ABOUT FINDING AND FUNDING THE MOST INNOVATIVE, CREATIVE AND PARADIGM-CHANGING RESEARCH POSSIBLE. THE DATA GENERATED WITH HDF FUNDING OFTEN ALLOWS RESEARCHERS TO GET INITIAL FINDINGS THAT HELP THEM APPLY SUCCESSFULLY FOR LARGER, LONG-TERM FUNDING FROM OTHER FUNDING AGENCIES, INCLUDING THE NATIONAL INSTITUTES OF HEALTH. THE FOUNDATION'S CURRENT FOCUS IS ON 1) MODIFIER STUDIES - ON DNA REPAIR PATHWAYS, PROTEIN DEGRADATION AND OTHER MODIFIERS OF PHENOTYPE AND AGE OF ONSET AND 2) RESEARCH MECHANISMS OF HD NEURODEGENERATION AND BIOMARKERS AND THERAPY FOR HD-INDUCED NEURODEGENERATION.TYPE OF FUNDING:THE BASIC RESEARCH GRANTS PROGRAM: SUPPORTS PROJECTS CONTRIBUTING TO IDENTIFYING AND UNDERSTANDING THE FUNDAMENTAL DEFECTS IN HUNTINGTON'S DISEASE.POSTDOCTORAL FELLOWSHIPS: THESE POSTDOCTORAL FELLOWSHIPS ARE INTENDED TO CULTIVATE INTEREST IN HUNTINGTON'S DISEASE RESEARCH BY BRIGHT YOUNG SCIENTISTS. FELLOWSHIPS ARE GRANTED TO THOSE WHO POSSESS IMAGINATION, RIGOR, CREATIVITY AND SPIRIT TO PUSH FORWARD TOWARD A CURE FOR HD AND ENSURE THAT THESE LEARNING CAN BE APPLIED TO OTHER BRAIN DISEASES. 1645884 1 1 0 0 0 0 0 1 0 1 1 0 0 0 0 1 1 0 0 0 1 1 1 1 1 0 0 1 1 1 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 5 1 0 0 0 0 0 1 1 0 0 0 0 X 17 16 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 0 1 1 0 NY CA X MEGHAN DONALDSON 2129282121 3960 BROADWAY 6TH FLOOR NEW YORK NY 10032 JONATHAN GUEST CEO THRU DEC 2016 40.00 X X 195000 0 0 NANCY S WEXLER PHD PRESIDENT 7.00 X X 0 0 0 ALICE WEXLER PHD SECRETARY 1.00 X X 0 0 0 FRANK O GEHRY DIRECTOR 1.00 X 0 0 0 DAVID HOUSMAN PHD DIRECTOR 1.00 X 0 0 0 JOAN LEIMAN DIRECTOR 1.00 X 0 0 0 HERBERT PARDES MD DIRECTOR 2.00 X 0 0 0 ANNE B YOUNG MD PHD VICE CHAIR 1.00 X X 0 0 0 DAVID ZWALLY CHAIR 1.00 X X 0 0 0 ROBI BLUMENSTEIN DIRECTOR 1.00 X 0 0 0 BRUCE DONALDSON TREASURER 1.00 X 0 0 0 SANDY FOX DIRECTOR 1.00 X 0 0 0 BERTA A GEHRY DIRECTOR 1.00 X 0 0 0 DAVID GERSTENHABER DIRECTOR 1.00 X 0 0 0 KELLY POSNER GERSTENHABER PHD DIRECTOR 1.00 X 0 0 0 ARTHUR GOLDING MD DIRECTOR 1.00 X 0 0 0 KAREN NEWMAN DIRECTOR 1.00 X 0 0 0 TRAVIS CAREY CHIEF FINANCIAL OFFICER 10.00 X 0 0 0 195000 0 0 1 0 1 0 0 494442 1613244 2107686 273233 273233 3944600 3929097 15503 15503 15503 25750 494442 132839 -107089 -107089 2289333 0 0 181647 253049 253049 370000 370000 111395 111395 250388 158655 62483 29250 178918 130727 18189 30002 38284 25842 4785 7657 25357 16034 5175 4148 55044 55044 50872 50872 100075 19119 8350 72606 169038 128469 16904 23665 4621 662 3844 115 420437 420437 11001 8008 2993 MISCELLANEOUS 10631 3487 6919 225 2049110 1645884 235558 167668 283161 820716 1226758 1245563 743274 568408 438606 438606 0 0 8836100 9075265 21051 21051 11110344 11731003 74633 5633 457297 560110 531930 565743 X 36410 221477 2017004 2418783 8525000 8525000 10578414 11165260 11110344 11731003 240223 346623 0 X X 0 1 X 1 0 X 1951430 1120348 2670705 1886920 2107686 9737089 1951430 1120348 2670705 1886920 2107686 9737089 2463168 7273921 311905 263221 305949 267915 273233 1422223 11159312 0.65180 0.70560 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X ARTWORK 0 7566144 580315 446040 7700419 8250520 -225617 458759 7566144 8512186 205358 467024 8250520 7703889 1233025 424728 8512186 7373196 719433 388740 7703889 1.00000 0 0 401737 401737 0 36869 36869 0 0 X 2813751 346623 100000 446623 2367128 55044 -132839 -77795 2289333 2226905 100000 132839 232839 1994066 55044 55044 2049110 PART III, LINE 1A: THE COLLECTIONS, WHICH CONSIST OF ARTWORK, WERE ACQUIRED THROUGH PURCHASES AND CONTRIBUTIONS SINCE THE FOUNDATION'S INCEPTION, AND ARE NOT RECOGNIZED AS ASSETS IN THE ACCOMPANYING STATEMENTS OF FINANCIAL POSITION AT DECEMBER 31, 2016, AS THEIR VALUE IS NOT DETERMINABLE. PART V, LINE 4: THE FOUNDATION INTENDS TO USE THE ENDOWMENT FUNDS FOR ITS SCIENTIFIC ACTIVITIES WHICH INCLUDES PROVIDING GRANTS TO FUND SCIENTIFIC RESEARCH TO FURTHER THE UNDERSTANDING OF, AND TO DEVELOP DIAGNOSTICS AND THERAPEUTICS FOR, NEURODEGENERATIVE DISEASES, INCLUDING HUNTINGTON'S DISEASE. PART X, LINE 2: THE FOUNDATION ACCOUNTS FOR UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH ASC TOPIC, INCOME TAXES. THIS STANDARD CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN TAX POSITIONS AND PRESCRIBES A RECOGNITION THRESHOLD AND MEASUREMENT ATTRIBUTE FOR THE FINANCIAL STATEMENTS REGARDING A TAX POSITION TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN. THE FOUNDATION HAS DETERMINED THAT THERE ARE NO UNCERTAIN TAX POSITIONS WHICH QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS AT DECEMBER 31, 2016. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSE -132,839. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE 132,839. 1 SOUTH AMERICA - VENEZUELA 1 1 PROGRAM SERVICES OPERATION OF A CLINIC AND NURSING HOME FOR HUNTINGTON'S PATIENTS 55395 BORDEAUX, FRANCE 1 1 GRANTS TO RECIPIENTS LOCATED IN REGION SCIENTIFIC RESEARCH 50000 ONTARIO, CANADA 1 1 GRANTS TO RECIPIENTS LOCATED IN REGION SCIENTIFIC RESEARCH 6000 3 3 0 0 3 3 111395 0 111395 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES SCIENTIFIC RESEARCH 6000 CHECK 1 CASH GRANT TO ASSIST IN OPERATIONS OF A CLINIC/NURSING HOME FOR HUNTINGTON'S PATIENTS. SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 1 55395 CHECK FMV SCIENTIFIC RESEARCH BORDEAUX, FRANCE 1 50000 CHECK FMV 0 0 0 0 0 0 PART I, LINE 2: EXPENSES INCURRED OUTSIDE THE UNITED STATES ARE MONITORED THROUGH THE SUBMISSION OF INVOICES TO THE CENTRAL OFFICE LOCATED IN NEW YORK AS WELL AS THE PRESIDENTS CONSISTENT CONTACT WITH THE PROGRAM DIRECTOR REGARDING PROGRAM ACTIVITIES. X 1 SUSAN QUINLAN MARTIN 350 EAST 55TH STREET NEW YORK NY 10022 FUNDRAISING 0 520192 48000 472192 520192 48000 472192 NY CA GALA 520192 494442 25750 44133 1395 87311 2 520192 494442 25750 44133 1395 87311 132839 -107089 1 NEW YORK GENOME CENTER 101 AVE OF THE AMERICAS NEW YORK NY 10013 210672684 165267 RESEARCH GLADSTONE INSTITUTE 1650 OWENS STREET SAN FRANCISCO CA 94158 237203666 15802 RESEARCH NEW YOUR BRAIN BANK 3959 BROADWAY NEW YORK NY 10032 800496512 46980 RESEARCH BUCK INSTITUTE 8001 REDWOOD BLVD NOVATO CA 94945 943030609 25000 RESEARCH 4 SCIENTIFIC RESEARCH 4 370000 PART I, LINE 2: THE FOUNDATION MONITORS ITS GRANTS BY REQUIRING SCIENCE RESEARCH PROGRESS REPORTS FROM GRANTEES AS A CONDITION TO FURTHER PAYMENTS OF ANY GRANT PAYABLE IN INSTALLMENTS, AND A FINAL REPORT ON COMPLETION OF THE RESEARCH. X X 0 0 0 0 0 0 0 0 0 JONATHAN GUEST CEO THRU DEC 2016 195000 0 0 0 0 0 0 0 0 0 195000 0 0 0 DAVID HOUSMAN PHD DR. HOUSMAN IS ON THE BOARD OF DIRECTORS OF HEREDITARY DISEASE FOUNDATION 100000 RESEARCH GRANT AWARDED TO DR. HOUSMAN'S LAB AT MIT FORM 990, PART VI, SECTION A, LINE 2 NANCY WEXLER, PRESIDENT, AND ALICE WEXLER, SECRETARY, ARE SISTERS AND BOTH ARE MEMBERS OF THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION B, LINE 11B THE FOUNDATION PROVIDES THE 990 TO THE BOARD OF DIRECTORS FOR APPROVAL. FORM 990, PART VI, SECTION B, LINE 12C ANNUAL CONFLICT OF INTEREST STATEMENTS ARE CIRCULATED TO ALL OFFICERS, DIRECTORS, AND KEY EMPLOYEES AT THE BOARD OF DIRECTORS MEETING. MANAGEMENT MAINTAINS SIGNED COPIES OF THESE STATEMENTS FOR ALL SUCH INDIVIDUALS TO ENSURE COMPLIANCE WITH THIS POLICY. FORM 990, PART VI, SECTION B, LINE 15 A WRITTEN EMPLOYEE CONTRACT IS ESTABLISHED AND APPROVED BY THE BOARD OR COMPENSATION COMMITTEE. FORM 990, PART VI, SECTION C, LINE 19 THE FOUNDATION MAKES GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART XII, LINE 2C: THE FOUNDATION'S AUDIT COMMITTEE ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT.