HEREDITARY NEUROPATHY FOUNDATION INC

EIN: 134137654 501(c)(3) Medical Research

NEW YORK, NY

Total Revenue
$545,418
Total Expenses
$894,903
Total Assets
$1,016,066
Net Assets
$1,009,884
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2001
Legal Domicile
NY
Principal Officer
ALLISON MOORE
Phone
2127228396
Tax Period
2024-07-01 to 2025-06-30

HEREDITARY NEUROPATHY FOUNDATION INC, founded in 2001, is a small nonprofit in the Medical Research sector that reported $545K in total revenue in fiscal year 2024. Revenue decreased 17% compared to the prior year. Expenses of $895K exceeded revenue, resulting in a 64% operating deficit.

Mission

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.

Program Service Accomplishments

Program 1
Expenses: $805,802

RESEARCH PROGRAMS ARE AS FOLLOWS: THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) CONTINUES TO SERVE AS HNF'S PRIMARY TRANSLATIONAL RESEARCH ACCELERATOR, SUPPORTING THE DEVELOPMENT OF ESSENTIAL...

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RESEARCH PROGRAMS ARE AS FOLLOWS: THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) CONTINUES TO SERVE AS HNF'S PRIMARY TRANSLATIONAL RESEARCH ACCELERATOR, SUPPORTING THE DEVELOPMENT OF ESSENTIAL RESEARCH TOOLS (INCLUDING IPSCS AND ANIMAL MODELS), THERAPEUTIC CANDIDATES, DRUG SCREENING INITIATIVES, GENE THERAPY PROGRAMS, AND DIGITAL HEALTH TECHNOLOGY INNOVATIONS. THE PROGRAM MAINTAINS STRONG PARTNERSHIPS WITH ACADEMIC INSTITUTIONS, REGULATORY AGENCIES, AND INDUSTRY COLLABORATORS AND ADVANCES KEY SCIENTIFIC INITIATIVES IN BIOMARKER DEVELOPMENT, CLINICAL ENDPOINT REFINEMENT, AND THERAPY TRANSLATION. TRIAD ALSO LEADS THE ANNUAL CMT CLINICAL TRIAL READINESS SUMMIT, WHICH BRINGS TOGETHER GLOBAL EXPERTS TO ALIGN ON REGULATORY EXPECTATIONS, OPTIMIZE TRIAL DESIGN, AND ACCELERATE THERAPY DEVELOPMENT. THE GLOBAL REGISTRY FOR INHERITED NEUROPATHIES (GRIN) CONTINUES TO GROW AS AN INTERNATIONAL CMT PATIENT REGISTRY, CAPTURING NATURAL HISTORY DATA AND PROVIDING COMPREHENSIVE PATIENT-REPORTED, CLINICAL, DIGITAL, AND GENETIC DATASETS. GRIN PLAYS A CRITICAL ROLE IN CLINICAL TRIAL READINESS, SUPPORTING FEASIBILITY ASSESSMENTS, ENDPOINT DEVELOPMENT, AND PATIENT RECRUITMENT FOR THERAPEUTIC DEVELOPMENT PROGRAMS. GRIN INSIGHTS AND DATA INFRASTRUCTURE INFORM KEY SESSIONS AND WORKING GROUPS AT THE CMT CLINICAL TRIAL READINESS SUMMIT, HELPING RESEARCHERS AND INDUSTRY PARTNERS ADDRESS UNMET NEEDS AND STRENGTHEN FUTURE TRIAL STRATEGIES. THE CMT BIOBANK CONTINUES TO EXPAND ITS PATIENT SAMPLE COLLECTION, INCLUDING BLOOD, SALIVA, TISSUE, SKIN FIBROBLASTS, IPSCS, AND OTHER BIOSPECIMENS DONATED BY INDIVIDUALS WITH CMT. THESE SAMPLES ARE PROCESSED AND STORED UNDER STRICT QUALITY-CONTROLLED PROTOCOLS AND REMAIN SECURELY LINKED TO GRIN CLINICAL, DIGITAL, AND GENETIC DATA. THIS INTEGRATED RESOURCE SUPPORTS PRE-COMPETITIVE BIOMARKER DISCOVERY, MOLECULAR RESEARCH, AND DIGITAL BIOMARKER VALIDATION, ENABLING RESEARCHERS AND INDUSTRY PARTNERS TO ACCELERATE THERAPEUTIC DEVELOPMENT. FINDINGS AND COLLABORATIVE OPPORTUNITIES FROM THE BIOBANK ARE REGULARLY HIGHLIGHTED AT THE CMT CLINICAL TRIAL READINESS SUMMIT, WHERE CROSS-SECTOR PARTNERS ALIGN ON BIOMARKER PRIORITIES AND STRATEGIES TO ADVANCE FUTURE TREATMENTS.

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Trantor Score

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $582,345
Program Service Revenue $0
Investment Income $5,908
Other Revenue $-42,835
TOTAL REVENUE $545,418

Expense Breakdown

Grants Paid $319,283
Salaries & Benefits $198,415
Fundraising Expenses $33,944
Program Expenses $805,802
Other Expenses $377,205
TOTAL EXPENSES $894,903

Year-over-Year Comparison

2024 2023 Change
Revenue $545,418 $655,296 -0.2%
Expenses $894,903 $730,003 +0.2%
Net Income $-349,485 $-74,707 +3.7%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
12
Independent Members
12
Employees
2
Volunteers
9

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
5
$127,675
Total Directors
12
$52,675
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
ALLISON MOORE FOUNDER AND CHIEF EXECUTIV 50.00
Officer Director
$0 $52,675 $52,675
KARA SPRAGUE TREASURER 5.00
Officer Director
$0 $0 $0
MATTHEW DOWNING CHAIRMAN 5.00
Officer Director
$0 $0 $0
KERIN REILLY BOARD MEMBER 5.00
Director
$0 $0 $0
GRETCHEN CAPPIELLO BOARD MEMBER 5.00
Director
$0 $0 $0
BROOKE WARREN SECRETARY 5.00
Officer Director
$0 $0 $0
ROBERT KAUFFMAN BOARD MEMBER 5.00
Director
$0 $0 $0
DOMINIC HADEED BOARD MEMBER 5.00
Director
$0 $0 $0
SITAL BHAVSAR BOARD MEMBER 5.00
Director
$0 $0 $0
NATALIA SALEJKO BOARD MEMBER 5.00
Director
$0 $0 $0
DENNIS SULLIVAN BOARD MEMBER 5.00
Director
$0 $0 $0
POYA GHASRI BOARD MEMBER 5.00
Director
$0 $0 $0
COURTNEY HOLLETT EXECUTIVE DIRECTOR 40.00
Officer
$75,000 $0 $75,000
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $545,418 $894,903 $1,016,066 $-349,485
2024 $655,296 $730,003 $1,503,541 $-74,707
2023 $543,625 $671,491 $1,515,448 $-127,866
2022 $1,259,879 $759,374 $1,627,053 $500,505
2021 $637,088 $679,388 $1,295,654 $-42,300
2020 $912,443 $623,754 $1,301,620 $288,689
2019 $753,319 $665,477 $969,441 $87,842
2018 $483,801 $518,886 $909,104 $-35,085
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