2016-08-09T09:32:42-05:00 2015-12-31 042571780 ALEXANDER ARONSON FINNING & CO PC 21 EAST MAIN STREET WESTBORO MA 01581 990 2015-01-01 237376197 HEREDITARY DISEASE FOUNDATION HERE 2129282121 3960 BROADWAY 6TH FLOOR NEW YORK NY 10032 JONATHAN C GUEST CEO 2129282121 2016-08-09 1 ROBIN KELLEY CPA P00540259 5083669100 2016-08-08 2015 2016-12-15 16:53:06Z JONATHAN C GUEST 3960 BROADWAY 6TH FLOOR NEW YORK NY 10032 4432954 0 X HDFOUNDATION.ORG X 1968 CA THE PURPOSE OF THE FOUNDATION IS TO SUPPORT AND FUND SCIENTIFIC RESEARCH SEEKING TO FURTHER THE UNDERSTANDING OF, AND TO DEVELOP DIAGNOSTICS AND THERAPEUTICS FOR, NEURODEGENERATIVE DISEASES, IN PARTICULAR, HUNTINGTON'S DISEASE. 17 16 5 1 0 0 3133228 1886920 0 0 972849 539898 103870 -68646 4209947 2358172 419159 793978 0 0 413284 640043 0 0 63619 1015644 453123 1848087 1887144 2361860 471028 11378074 11110344 600178 531930 10777896 10578414 THE PURPOSE OF THE FOUNDATION IS TO SUPPORT AND FUND SCIENTIFIC RESEARCH SEEKING TO FURTHER THE UNDERSTANDING OF, AND TO DEVELOP DIAGNOSTICS AND THERAPEUTICS FOR, NEURODEGENERATIVE DISEASES, IN PARTICULAR, HUNTINGTON'S DISEASE. 0 0 1329281 793978 THE STARTING POINT FOR MOST RESEARCH HAS BEEN THE QUESTION OF HOW THE EXPANSION OF A POLYGLUTAMINE TRACT IN A PROTEIN CALLED HUNTINGTIN CAN LEAD TO NEURODEGENERATIVE DISEASE. MUCH OF THE RESEARCH FOCUS HAS BEEN ON THE ASSAYS THAT WILL ALLOW HIGH THROUGH-PUT SCREENINGS OF MOLECULES THAT CAN BE TURNED INTO MEDICINES. 1329281 1 1 0 0 0 0 0 1 0 1 1 1 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 1 0 0 0 0 0 0 0 0 1 1 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 JONATHAN C GUEST 2129282121 3960 BROADWAY 6TH FLOOR NEW YORK NY 10032 JONATHAN GUEST CHIEF EXECUTIVE OFFICER & VICE PRES. 40.00 X X 180000 0 0 NANCY S WEXLER PHD PRESIDENT 35.00 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 JONATHAN MATZ DIRECTOR 1.00 X 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 TRAVIS CAREY CHIEF FINANCIAL OFFICER 30.00 X 29850 0 0 FRANK MUCHA CFO & TREASURER THRU AUG 2015 40.00 X 74375 0 0 284225 0 0 1 0 1 0 MCCARTER & ENGLISH LLP 100 MILBERRY STREET NEWARK NJ 07102 LEGAL 116074 1 806456 1080464 147972 1886920 267915 267915 2192844 1920861 271983 271983 271983 50544 806456 153921 -103377 -103377 MISCELLANEOUS 999999 34731 34731 34731 2358172 34731 0 436521 141695 141695 391736 391736 260547 260547 284225 91680 185537 7008 283594 209206 54670 19718 39779 21831 17163 785 32445 21613 9319 1513 60241 60241 47560 47560 70053 20921 24694 24438 161963 76623 77960 7380 14279 3340 8237 2702 75505 75505 11933 8959 2974 MISCELLANEOUS 11589 5625 5889 75 1887144 1329281 494244 63619 307549 283161 838133 743274 438606 438606 0 0 5915250 5635528 4296091 4427330 21051 21051 11378074 11110344 128554 74633 471624 457297 600178 531930 X -285672 36410 2538568 2017004 8525000 8525000 10777896 10578414 11378074 11110344 X 471028 -705274 34764 X X 0 1 X 1 0 X 661521 1951430 1120348 2670705 1886920 8290924 661521 1951430 1120348 2670705 1886920 8290924 1412480 6878444 308662 311905 263221 305949 267915 1457652 9748576 0.70560 0.64090 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X COLLECTIONS 0 8250520 -225617 458759 7566144 8512186 205358 467024 8250520 7703889 1233025 424728 8512186 7373196 719433 388740 7703889 7953844 -173007 407641 7373196 1.00000 0 0 401737 401737 0 36869 36869 0 0 GOVERNMENT FIXED INCOME 3200572 F CASH AND MONEY MARKETS 1226758 F 4427330 X 1846611 -705274 100000 34764 -570510 2417121 60241 -119190 -58949 2358172 2046093 100000 119190 219190 1826903 60241 60241 1887144 PART III, LINE 1A: COLLECTIONS OF WORKS OF ART. 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, 2015. PART XI, LINE 2D - OTHER ADJUSTMENTS: INSURANCE GAIN 34,764. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSE -153,921. RECOVERED GRANTS 34,731. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE 153,921. RECOVERED GRANTS -34,731. 1 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 1 1 PROGRAM SERVICES OPERATION OF A CLINIC AND NURSING HOME FOR HUNTINGTON'S PATIENTS. 66355 1 1 0 0 1 1 66355 0 66355 NORTH AMERICA LORA'S HOPE PROJECT 10000 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 66355 CHECK FMV RESEARCH EAST ASIA AND THE PACIFIC 1 122900 CHECK FMV RESEARCH EUROPE (INCLUDING ICELAND & GREENLAND) 1 61292 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 857000 68000 789000 857000 68000 789000 NY CA GIGI ON BROADWAY 143460 136666 6794 7000 6873 250 GALA 713540 669790 43750 40498 12312 1100 85888 2 857000 806456 50544 40498 19312 7973 86138 153921 -103377 1 NEW YORK GENOME CENTER 101 AVE OF THE AMERICAS NEW YORK NY 10013 210672684 89725 RESEARCH GORDON CONFERENCE 512 LIBERTY LANE WEST KINGSTON RI 02892 260150662 5000 RESEARCH NEW YOUR BRAIN BANK 3959 BROADWAY NEW YORK NY 10032 800496512 46970 RESEARCH 3 CHESSELET, MARIE-FRANCOISE/REED NEUROLOGICAL RESEARCH CENTER 1 101736 BEVERLY DAVIDSON/CHILDREN'S HOSPITAL OF PHILADELPHIA 1 100000 DAVID HOUSMAN/ MASSACHUSETTS INSTITUTE OF TECHNOLOGY 1 190000 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 CHIEF EXECUTIVE OFFICER & VICE PRES. 180000 0 0 0 0 0 0 0 0 0 180000 0 0 0 DAVID HOUSMAN PHD DR. HOUSMAN IS ON THE BOARD OF DIRECTORS OF HEREDITARY DISEASE FOUNDATION 190000 RESEARCH GRANT AWARDED TO DR. HOUSMAN'S LAB AT MIT X 4 147972 FAIR MARKET VALUE 0 0 0 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 11 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 XI, LINE 9: INSURANCE GAIN 34,764. FORM 990, PART XII, LINE 2C: THE FOUNDATION'S AUDIT COMMITTEE ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT.