2025-05-14T12:44:36-05:00 2024-12-31 812950760 SAX LLP 389 INTERPACE PARKWAY STE 3 PARSIPPANY NJ 07054 990 2024-01-01 237376197 HEREDITARY DISEASE FOUNDATION HERE 2129282121 601 WEST 168TH STREET 54 NEW YORK NY 10032 MEGHAN DONALDSON CEO 2129282121 2025-05-14 1 0 MARQUS WHITE P00053187 9734726250 2025-05-08 2024 2025-03-06 01:10:19Z MEGHAN DONALDSON 601 WEST 168TH STREET 54 NEW YORK NY 10032 14021176 0 X WWW.HDFOUNDATION.ORG X 1968 CA TO FUND TRANSFORMATIVE RESEARCH TO FIND TREATMENTS, AND ULTIMATELY A CURE, FOR HUNTINGTON'S DISEASE. 18 16 4 50 0 0 2087245 6573281 0 0 488200 1243205 3396 82735 2578841 7899221 3497370 2869473 0 0 530916 654479 42542 0 294843 667807 1000193 4738635 4524145 -2159794 3375076 18234308 21978294 3091412 2828419 15142896 19149875 X TO FUND TRANSFORMATIVE RESEARCH TO FIND TREATMENTS, AND ULTIMATELY A CURE, FOR HUNTINGTON'S DISEASE. 0 0 3899500 2869473 THE HEREDITARY DISEASE FOUNDATION (HDF) ADVANCES PARADIGM-CHANGING HUNTINGTON'S DISEASE (HD) RESEARCH THROUGH A COLLABORATIVE APPROACH TO SCIENTIFIC DISCOVERY. WE INVEST IN RESEARCH BY PROVIDING SENIOR SCIENTISTS WITH GRANTS, INCLUDING OUR MILLION-DOLLAR TRANSFORMATIVE RESEARCH AWARDS, WHICH BEGAN IN 2023, AND FUNDING THE WORK OF EARLY CAREER SCIENTISTS THROUGH POSTDOCTORAL FELLOWSHIPS. WE CHAMPION COLLABORATIVE SCIENCE BY ORGANIZING BOTH SMALL THINKTANK-STYLE WORKSHOPS AND LARGE SCIENTIFIC CONFERENCES WHICH ENABLE EXPERTS IN HD TO SHARE THEIR LATEST DISCOVERIES, EXPLORE CUTTING-EDGE TECHNOLOGIES, AND FORM COLLABORATIONS. WE HIGHLIGHT FOR THE PUBLIC NOTABLE WORK OF SCIENTISTS THROUGH OUR WEBINARS.(CONTINUED ON SCHEDULE O)IN ITS EARLY YEARS, RESEARCH ORGANIZED AND FUNDED BY THE HDF WAS THE CATALYST FOR THE WORK THAT ISOLATED THE GENE THAT CAUSES HUNTINGTON'S DISEASE. THIS FINDING LED TO THE DEVELOPMENT OF A GENETIC TEST FOR HD AND LAUNCHED MODERN RESEARCH EFFORTS. THE HEREDITARY DISEASE FOUNDATION SUPPORTS RESEARCH THROUGH SEVERAL FUNDING OPPORTUNITIES.HDF RESEARCH GRANTS: ONE-YEAR GRANTS PROVIDE SENIOR RESEARCHERS WITH SEED FUNDING TO ENABLE THEM TO COLLECT THE PRELIMINARY DATA NEEDED TO OBTAIN MAJOR, LONG-TERM FUNDING FROM OTHER ORGANIZATIONS, INCLUDING THE NIH.HDF POSTDOCTORAL FELLOWSHIPS: TWO-YEAR FELLOWSHIPS FUND THE WORK OF EARLY-CAREER SCIENTISTS. THESE FELLOWSHIPS ARE INTENDED TO ENCOURAGE AND CULTIVATE INTEREST IN HUNTINGTON'S DISEASE RESEARCH.TRANSFORMATIVE RESEARCH AWARDS: THESE MILLION-DOLLAR RESEARCH AWARDS, HDF'S LARGEST GRANTS, FUND COLLABORATIVE RESEARCH TEAMS TO CREATE INNOVATIVE WAYS TO STUDY NEW PATHOGENIC DISEASE MECHANISMS AND TREATMENT MODALITIES IN HUNTINGTON'S DISEASE.HD CAREER ADVANCEMENT GRANTS: THESE ARE OUR NEWEST AWARDS WITH GRANTS BEGINNING IN 2025. THIS INCUBATOR PROGRAM SUPPORTS YOUNG INVESTIGATORS BY PROVIDING RESOURCES AND TOOLS TO BUILD THE NECESSARY SKILLS TO BRIDGE THE TRANSITION FROM POSTDOCTORAL POSITION TO TENURE-TRACK PRIMARY INVESTIGATOR. OUR GOAL THROUGH THIS PROGRAM AND OUR POSTDOCTORAL FELLOWSHIPS IS TO ENGAGE AND RETAIN THE BRIGHTEST MINDS IN HD RESEARCH BY FUNDING AND MENTORING EARLY-CAREER SCIENTISTS.HDF-FUNDED RESEARCHERS HAVE MADE SIGNIFICANT STRIDES IN APPLYING ADVANCED TECHNIQUES SUCH AS ARTIFICIAL INTELLIGENCE (AI), CRISPR AND BRAIN MAPPING, LEADING TO TREMENDOUS PROMISE FOR POTENTIAL TREATMENTS FOR HUNTINGTON'S DISEASE. 3899500 1 1 0 0 0 0 0 0 0 1 0 1 0 0 1 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 0 0 1 6 0 1 4 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 18 16 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CA NY X X MEGHAN DONALDSON 2129282121 601 WEST 168TH STREET NEW YORK NY 10032 MEGHAN DONALDSON CEO 40.00 X X 110000 0 0 KAREN NEWMAN CHAIR 24.00 X X 12000 0 0 NANCY S WEXLER PHD PRESIDENT 1.00 X X 0 0 0 ANNE B YOUNG MD PHD VICE CHAIR 1.00 X X 0 0 0 BRUCE DONALDSON TREASURER 1.00 X X 0 0 0 ALICE WEXLER PHD SECRETARY 1.00 X X 0 0 0 C FRANK BENNETT PHD DIRECTOR 1.00 X 0 0 0 ROBI BLUMENSTEIN DIRECTOR 1.00 X 0 0 0 SANDY FOX DIRECTOR 1.00 X 0 0 0 TACIE FOX DIRECTOR 1.00 X 0 0 0 BERTA A GEHRY DIRECTOR 1.00 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 PHD DIRECTOR 1.00 X 0 0 0 HERBERT PARDES MD DIRECTOR (THROUGH 4/24) 1.00 X 0 0 0 LAUREN BAKER PINKUS DIRECTOR 1.00 X 0 0 0 LESLIE M THOMPSON PHD DIRECTOR 1.00 X 0 0 0 DAVID ZWALLY DIRECTOR 1.00 X 0 0 0 MELISSA MOSER DIRECTOR 1.00 X 0 0 0 TIM KELLEHER CFO 6.00 X 42765 0 0 SARAH HERNANDEZ DIR. OF RESEARCH PROGRAMS 40.00 X 143929 0 55917 JULIE PORTER DIR. OF ADMINISTRATION 40.00 X 116065 0 30005 ERICA MATISZ DIR. OF DEVELOPMENT 40.00 X 108500 0 0 533259 0 85922 4 0 1 0 0 327197 6246084 5215620 6573281 357558 357558 6969299 6083652 885647 885647 885647 38303 327197 38303 0 MISCELLANEOUS 900099 82735 82735 82735 7899221 0 0 1325940 2121165 2121165 748308 748308 164765 55000 87765 22000 370594 236594 22667 111333 85922 76921 3000 6001 33198 20143 3845 9210 77000 77000 89551 89551 211922 135345 19646 56931 11126 560 6969 3597 47639 23905 4563 19171 435111 417369 3703 14039 7058 4282 818 1958 COMPUTER SUPPORT AND MA 46181 11296 4340 30545 POSTAGE & PRINTING 41586 23803 387 17396 OTHER EXPENSE 33019 24809 5548 2662 4524145 3899500 329802 294843 588649 386234 1085556 1654084 1756404 986607 37315 50271 14760979 13760642 5137263 5405 3193 18234308 21978294 122606 17125 2968806 2791613 0 19681 3091412 2828419 X 3125464 3390111 12017432 15759764 15142896 19149875 18234308 21978294 X 3375076 556903 75000 X 0 1 X 1 0 X 3654196 2827274 4399874 2087245 6573281 19541870 3654196 2827274 4399874 2087245 6573281 19541870 9450281 10091589 262035 245544 270807 373677 357558 1509621 17960 139069 36718 3396 82735 279878 21331369 0.47310 0.56570 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 10208361 1248253 510418 58452 10887744 8982275 1732681 449114 57481 10208361 11593322 -1958855 579666 72526 8982275 10244052 1932598 512203 71125 11593322 9703171 1026040 485159 10244052 0.78300 0.21700 0 0 0 5137263 F 5137263 FUNDS HELD FOR OTHERS 19681 19681 X 8441573 556903 75000 631903 7809670 89551 89551 7899221 4434594 0 4434594 89551 89551 4524145 PART X, LINE 2: HDF DOES NOT BELIEVE ITS FINANCIAL STATEMENTS INCLUDE ANY MATERIAL, UNCERTAIN TAX POSITIONS. TAX FILINGS FOR THE PERIODS ENDING DECEMBER 31, 2021 AND LATER ARE SUBJECT TO EXAMINATION BY APPLICABLE TAXING AUTHORITIES. PART XI, LINE 2D - OTHER ADJUSTMENTS: WRITE OFF OF GRANTS PAYABLE 75,000. 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES GRANTS TO RECIPIENTS SCIENTIFIC RESEARCH 350000 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM GRANTS TO RECIPIENTS SCIENTIFIC RESEARCH 198416 EAST ASIA AND THE PACIFIC GRANTS TO RECIPIENTS SCIENTIFIC RESEARCH 199892 0 0 0 0 0 0 748308 0 748308 AUSTRALIA SCIENTIFIC RESEARCH 199892 0 UNITED KINDOM SCIENTIFIC RESEARCH 100000 0 SPAIN SCIENTIFIC RESEARCH 98416 0 CANADA SCIENTIFIC RESEARCH 200000 0 CANADA SCIENTIFIC RESEARCH 100000 0 CANADA SCIENTIFIC RESEARCH 50000 0 0 0 0 0 0 0 PART I, LINE 2: HDF MONITORS THE USE OF ITS GRANTS BY REQUIRING SCIENCE RESEARCH PROGRESS REPORTS EVERY 6 MONTHS FROM ITS GRANTEES WHICH MUST BE APPROVED BY THE HDF'S DIRECTOR OF RESEARCH PROGRAMS AS A CONDITION TO FURTHER PAYMENTS TO THE GRANTEE. HDF PAYS ITS GRANTS IN INSTALLMENTS EVERY SIX MONTHS AND REQUIRES A FINAL REPORT UPON COMPLETION OF THE RESEARCH. HD BENEFIT 365500 327197 38303 8240 25105 4958 365500 327197 38303 8240 25105 4958 38303 0 1 REGENTS OF THE UNIVERSITY OF CA IRVINE 228 ALDRICH HALL IRVINE CA 926971050 952226406 501C3 100000 0 SCIENTIFIC RESEARCH REGENTS OF THE UNIV OF CA - SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 920930934 956006144 501C3 100000 0 SCIENTIFIC RESEARCH THE BOARD OF TRUSTEES OF THE LELAND STANF 485 BROADWAY ST REDWOOD CITY CA 94063 941156365 501C3 175672 0 SCIENTIFIC RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA THE 2716 SOUTH STREET PHILADELPHIA PA 19146 231352166 501C3 100000 0 SCIENTIFIC RESEARCH MASSACHUSETTS INSTITUTE OF TECHNOLOGY 77 MASSACHUSETTS AVENUE CAMBRIDGE MA 021394307 042103594 501C3 100000 0 SCIENTIFIC RESEARCH MASSACHUSETTS INSTITUTE OF TECHNOLOGY 77 MASSACHUSETTS AVENUE CAMBRIDGE MA 021394307 042103594 501C3 30000 0 SCIENTIFIC RESEARCH THE REGENTS UN OF CALIFORNIA -LOSANGELES 10920 WILSHIRE BLVD SUITE 500 LOS ANGELES CA 900951406 956006143 501C3 100000 0 SCIENTIFIC RESEARCH WASHINGTON UNIVERSITY SCHOOL OF MEDICINE IN ST LOUIS 7425 FORSYTH BLVD SAINT LOUIS MO 63105 430653611 501C3 1104000 0 SCIENTIFIC RESEARCH NORTHWESTERN UNIVERSITY 633 CLARK STREET EVANSTON IL 60208 362167817 501C3 200000 0 SCIENTIFIC RESEARCH CENTER FOR GENOMIC MEDICINE MASSACHUSETTS GENERAL HOSPITAL 185 CAMBRIDGE STREET BOSTON MA 02114 041564655 501C3 100000 0 SCIENTIFIC RESEARCH 10 PART I, LINE 2: HDF MONITORS THE USE OF ITS GRANTS BY REQUIRING SCIENCE RESEARCH PROGRESS REPORTS EVERY 6 MONTHS FROM ITS GRANTEES WHICH MUST BE APPROVED BY THE HDF'S DIRECTOR OF RESEARCH PROGRAMS AS A CONDITION TO FURTHER PAYMENTS TO THE GRANTEE. HDF PAYS ITS GRANTS IN INSTALLMENTS EVERY SIX MONTHS AND REQUIRES A FINAL REPORT UPON COMPLETION OF THE RESEARCH. X X 0 0 0 0 0 0 0 0 0 SARAH HERNANDEZ DIR. OF RESEARCH PROGRAMS 143929 0 0 0 0 0 0 0 55917 0 199846 0 0 0 DAVID HOUSMAN BOARD MEMBER 130000 RESEARCH GRANT SEE PT V SCHEDULE L, PART III, LINE 1 GRANT PAID TO MIT TO FUND SCIENTIFIC RESEARCH CONDUCTED BY DR HOUSMAN'S LAB. X 6 78357 FMV X 1 5137263 FMV 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. MEGHAN DONALDSON, CEO, AND BRUCE DONALDSON, BOARD MEMBER, ARE MARRIED AND ARE BOTH MEMBERS OF THE BOARD OF DIRECTORS. FRANK GEHRY AND BERTA GEHRY ARE MARRIED AND BOTH ARE MEMBERS OF THE BOARD OF DIRECTORS. SANDY FOX IS THE AUNT OF DAVID ZWALLY AND BOTH ARE MEMBERS OF THE BOARD OF DIRECTORS. TACIE FOX IS THE DAUGHTER OF SANDY FOX 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 15A 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 ITS FINANCIAL STATEMENTS AND 990 AVAILABLE TO THE PUBLIC ON ITS WEBSITE, WWW.HDFOUNDATION.ORG. THE FOUNDATION MAKES ITS GOVERNING DOCUMENTS AND CONFLICT OF INTEREST POLICY AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART VI, LINE 13 AND 14 THE ORGANIZATION HAD A DRAFT WHISTLEBLOWER AND DOCUMENT RETENTION POLICY IN PLACE AS OF 12/31/24. THE POLICIES WERE FORMALLY APPROVED BY THE BOARD OF DIRECTORS PRIOR TO THE 5/15/25 FILING OF THE FORM 990. FORM 990, PART XI, LINE 9: WRITE OFF OF GRANTS PAYABLE 75,000.