2024-05-15T08:18:08-05:00 2023-06-30 141624930 TEAL BECKER & CHIARAMONTE CPAS PC 7 WASHINGTON SQUARE ALBANY NY 12205 990 2022-07-01 134137654 HEREDITARY NEUROPATHY FOUNDATION INC HERE 2127228396 1641 3RD AVE 28K NEW YORK NY 10128 ALLISON MOORE CEO/FOUNDER 2127228396 2024-05-14 1 ALLISON MOORE 999009999 0 STEPHANIE MUMFORD CPA P01278366 5184566663 2024-05-13 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z ALLISON MOORE 1641 3RD AVE 28K NEW YORK NY 10128 565871 0 X WWW.HNF-CURE.ORG X 2001 NY HNF, INC., A NON-PROFIT DEDICATED TO SUPPORTING PROJECTS THROUGH THE THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) PROGRAM, A COLLABORATIVE EFFORT WITH ACADEMIA, GOVERNMENT AND INDUSTRY, TO DEVELOP TREATMENTS FOR CMT. 14 14 2 7 0 0 1159086 559719 0 0 144223 4783 -43430 -20877 1259879 543625 372559 221051 0 0 167515 183600 0 0 55666 219300 266840 759374 671491 500505 -127866 1627053 1515448 5589 12282 1621464 1503166 X HNF, INC., A NON-PROFIT DEDICATED TO SUPPORTING PROJECTS THROUGH THE THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD)PROGRAM, A COLLABORATIVE EFFORT WITH ACADEMIA, GOVERNMENT AND INDUSTRY, TO DEVELOP TREATMENTS FOR CMT. CURRENTLY TRIAD INVOLVES MANY GROUPS THAT SPAN THE DRUG DISCOVERY, DRUG DEVELOPMENT, AND DIAGNOSTICS CONTINUUM. EDUCATION AND SUPPORT OF THE CMT COMMUNITY TO IMPROVE QUALITY OF LIFE IS ALSO A KEY COMPONENT OF HNF'S MISSION. 0 0 571824 221051 RESEARCH PROGRAMS ARE AS FOLLOWS: THE THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) PROGRAM FOCUSES ON FUNDING RESEARCH GRANTS AND VENTURE PHILANTHROPY (VP) THAT SUPPORTS THE DEVELOPMENT OF DRUG DISCOVERY, GENE THERAPY APPROACHES THAT HAVE THE MOST CHANCE OF SUCCESS. THROUGH PARTNERSHIPS WITH ACADEMIC UNIVERSITIES, CONTRACT RESEARCH ORGANIZATIONS, AND INDUSTRY LEADERS IN THE HEALTHCARE, BIOTECH, AND PHARMACEUTICAL SECTOR; HNF AIMS TO SUPPORT TRANSLATABLE THERAPY DEVELOPMENT ENABLING A PRE-IND PACKAGE AND FOR SUPPORT OF CLINICAL TRIALS. THE GLOBAL REGISTRY FOR INHERITED NEUROPATHIES (GRIN) PATIENT REGISTRY COLLECTS ROBUST NATURAL HISTORY STUDIES FOR ALL SUBTYPES OF CMT. GRIN IS THE ONLY CMT DATABASE THAT IS ALL INCLUSIVE COLLECTING PATIENT-REPORTED AND CAREGIVER SURVEYS, CURATED GENETIC DIAGNOSIS REPORTS AND CLINICAL DATA WHICH IS ESSENTIAL TO DRUG DISCOVERY AND CLINICAL TRIALS. GRIN IS GLOBAL, SCALABLE AND SUPPORTS ALL 125+ CMT-RELATED GENES WITH OVER 165 ASSOCIATED MUTATIONS. THE DATA HAS PROVEN TO BE ESSENTIAL IN CLINICAL TRIAL READINESS, UNDERSTANDING GENOTYPE/PHENOTYPE AND FOR CLINICAL TRIAL RECRUITMENT. THE CMT GENIE PROVIDES THE OPPORTUNITY FOR PATIENTS AND CLINICIANS TO CONNECT WITH GENETIC COUNSELING VIA TELEHEALTH AND SUBSEQUENTLY THE OPTION TO RECEIVE A GENETIC TEST KIT THROUGH THE MAIL. PATIENTS THEN HAVE THE OPTION TO SCHEDULE A FOLLOW-UP COUNSELING APPOINTMENT TO DISCUSS THE RESULTS AND UPLOAD THEM INTO THE SECURE GRIN PORTAL. THE CMT GENIE PROVIDES FASTER AND MORE EQUITABLE ACCESS TO CRITICAL GENETIC CARE FOR THE CMT COMMUNITY AND THEIR HEALTH CARE PROVIDERS. 571824 1 1 0 0 0 0 0 0 0 0 1 0 0 1 0 1 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 1 2 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 X 14 14 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 NY X X X HEREDITARY NEUROPATHY FOUNDATION INC 2127228396 1641 3RD AVE 28K NEW YORK NY 10128 ALLISON MOORE FOUNDER AND CHIEF EXECUTIV 50.00 X X 0 0 46845 KARA SPRAGUE TREASURER 5.00 X X 0 0 0 MATTHEW DOWNING CHAIRMAN 5.00 X X 0 0 0 KERIN REILLY BOARD MEMBER 5.00 X 0 0 0 GRETCHEN CAPPIELLO BOARD MEMBER 5.00 X 0 0 0 DEBORAH NEWCOMB BOARD MEMBER 5.00 X 0 0 0 BROOKE WARREN SECRETARY 5.00 X X 0 0 0 ROBERT KAUFFMAN BOARD MEMBER 5.00 X 0 0 0 DOMINIC HADEED BOARD MEMBER 5.00 X 0 0 0 SITAL BHAVSAR BOARD MEMBER 5.00 X 0 0 0 NATALIA SALEJKO BOARD MEMBER 5.00 X 0 0 0 JOY ANDAL KAYE BOARD MEMBER 5.00 X 0 0 0 DEBI HOUILARES BOARD MEMBER 5.00 X 0 0 0 POYA GHASRI BOARD MEMBER 5.00 X 0 0 0 COURTNEY HOLLETT EXECUTIVE DIRECTOR 40.00 X 60000 0 0 60000 0 46845 0 0 0 0 0 165957 393762 559719 5104 5104 1 322 -321 -321 -321 0 165957 21924 -21924 -21924 OTHER INCOME 900099 1047 1047 1047 543625 1047 0 -17141 X 110288 110288 110763 110763 66346 53076 6635 6635 60000 60000 46845 46845 10409 10409 19011 3876 15135 175342 156249 6854 12239 2179 2179 16807 6804 523 9480 2940 2019 429 492 44607 18275 26332 115 115 BANK FEES 3094 3094 FACILITY AND EQUIPMENT 1314 650 176 488 MEMBERSHIP DUES 462 462 969 800 169 671491 571824 44001 55666 1134645 1012181 8568 8568 75000 75000 27414 25801 0 1613 108840 118086 300000 300000 1627053 1515448 5589 12282 5589 12282 X 561835 396099 1059629 1107067 1621464 1503166 1627053 1515448 -127866 9568 0 X X 0 1 X 1 0 X 791079 942616 648242 1159086 559719 4100742 791079 942616 648242 1159086 559719 4100742 995865 3104877 257 566 539 1424 5104 7890 1021 1394 570 1418 1047 5450 4114082 0.75470 0.73210 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 27414 25801 1613 1613 INVESTMENT IN MIRALINC 300000 300000 X 726975 9568 151858 161426 565549 -21924 -21924 543625 845273 151858 21924 173782 671491 0 671491 PART X, LINE 2: THE ORGANIZATION FOLLOWS THE GUIDANCE FOR UNCERTAINTY IN INCOME TAXES. AS OF JUNE 30, 2023, THE ORGANIZATION BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR THE INCOME TAX POSITIONS TAKEN AND TO BE TAKEN ON ITS RETURNS BASED ON AN ASSESSMENT OF MANY FACTORS INCLUDING EXPERIENCE AND INTERPRETATIONS OF TAX LAWS APPLIED TO THE FACTS OF EACH MATTER. THE ORGANIZATION HAS CONCLUDED THAT THERE ARE NO SIGNIFICANT UNCERTAIN TAX POSITIONS REQUIRING DISCLOSURE, AND THERE ARE NO MATERIAL AMOUNTS OF UNRECOGNIZED TAX BENEFITS. PART XI, LINE 4B - OTHER ADJUSTMENTS: DIRECT FUNDRAISING EXPENSES -21,924. PART XII, LINE 2D - OTHER ADJUSTMENTS: DIRECT FUNDRAISING EXPENSES 21,924. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION TO ADVANCE RESEARCH INITIATIVES OF THE ORGANIZATION 110763 0 0 0 0 0 0 110763 0 110763 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM COLLECT NATURAL HISTORY DATA TO SUPPORT A CLINICAL DATABASE OF PATIENTS TO BETTER UNDERSTAND CLINICAL PHENOTYPE AND PROGRESSION OF THE DISEASE, TO FURTHER DEVELOP OUTCOME MEASURES, WHICH CAN FACILITATE THE DEVELOPMENT OF CLINICAL TRIALS. 60763 FUNDS TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM INVESTIGATING THE ROLE OF C12ORF65 IN THE QUALITY CONTROL OF MITOCHONDRIAL GENE EXPRESSION 50000 FUNDS TRANSFER 0 0 0 0 0 0 0 PART III ACCOUNTING METHOD: JACKSON'S CURE 108677 108677 20424 NY MARATHON 21477 21477 3 31973 31973 1500 162127 162127 21924 21924 -21924 1 THE UNIVERSITY OF MIAMI 1320 S DIXIE HIGHWAY GABLES ONE TOWER 650 LOCATOR CODE 2960 CORAL GABLES FL 33146 15000 0 RESEARCH RAREBASE PBC 1804 EMBARCADERO RD SUITE 201 PALO ALTO CA 94303 50000 0 RESEARCH ACROSS HEALTHCARE 306 B ROME STREET CARROLLTON GA 30117 40000 0 RESEARCH ENVIGO RMS LLC 8520 ALLISON OINTE BLVD SUITE 130 INDIANAPOLIS IN 46250 5110 0 RESEARCH PART I, LINE 2: THE ORGANIZATION ENTERS INTO CONTRACTS WITH ANY ENTITY THAT GRANT MONEY IS DISTRIBUTED TO. TYPICALLY THE CONTRACTS OUTLINE SPECIFIC USES FOR THE DONATED MONEY. ADDITIONALLY, A MAJORITY OF THE CONTRACTS ENTERED INTO HAVE VARIOUS MILESTONES OR METRICS THAT NEED TO BE MET FOR RESEARCH PURPOSES. THESE MILESTONES HELP ENSURE THE DONATED FUNDS ARE BEING SPENT APPROPRIATELY. FORM 990, PART VI, SECTION A, LINE 2 ALLISON MOORE CEO AND FOUNDER IS SISTER TO COURTNEY HOLLETT EXECUTIVE DIRECTOR. FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION DISTRIBUTES TO BOARD MEMBERS ELECTRONICALLY PRIOR TO FILING FORM 990. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION DISTRIBUTES CONFLICT OF INTEREST POLICIES AT ITS ANNUAL MEETING AND IF MATTERS GIVE RISE TO A CONFLICT OF INTEREST THE BOARD OF DIRECTORS ELIMINATES THE CONFLICT UPON DISCOVERY. FORM 990, PART VI, SECTION B, LINE 15A THE COMPENSATION REVIEW WAS UNDERTAKEN FOR THE NEWLY ESTABLISHED EXECUTIVE DIRECTOR'S POSITION OF WHICH THE BOARD OF DIRECTORS DETERMINED THE COMPENSATION BASED UPON THE MARKET AND SIZE OF THE ORGANIZATION. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING AND OTHER FINANCIAL DOCUMENTS AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G DESIGN AND PROGRAM CONSULTING: PROGRAM SERVICE EXPENSES 6,274. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 5,295. TOTAL EXPENSES 11,569. PAYROLL SERVICE FEES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 2,279. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 2,279. WEB/TECHNOLOGY/DESIGN/MAINTENANCE: PROGRAM SERVICE EXPENSES 149,975. MANAGEMENT AND GENERAL EXPENSES 4,575. FUNDRAISING EXPENSES 6,944. TOTAL EXPENSES 161,494. PART XII, LINE 2C THERE WERE NO CHANGES IN THE OVERSIGHT OF THE AUDIT FROM THE PRIOR YEAR.