HEREDITARY DISEASE FOUNDATION

EIN: 237376197 501(c)(3) Medical Research

NEW YORK, NY

Total Revenue
$7,899,221
Total Expenses
$4,524,145
Total Assets
$21,978,294
Net Assets
$19,149,875
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1968
Legal Domicile
CA
Principal Officer
MEGHAN DONALDSON
Phone
2129282121
Tax Period
2024-01-01 to 2024-12-31

HEREDITARY DISEASE FOUNDATION, founded in 1968, is a community nonprofit in the Medical Research sector that reported $7.9M in total revenue in fiscal year 2024. Revenue surged 206% from the prior year, signaling strong growth momentum. The organization ran a surplus of $3.4M, a strong 43% operating margin.

Mission

TO FUND TRANSFORMATIVE RESEARCH TO FIND TREATMENTS, AND ULTIMATELY A CURE, FOR HUNTINGTON'S DISEASE.

Program Service Accomplishments

Program 1
Expenses: $3,899,500

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...

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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.

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

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $6,573,281
Program Service Revenue $0
Investment Income $1,243,205
Other Revenue $82,735
TOTAL REVENUE $7,899,221

Expense Breakdown

Grants Paid $2,869,473
Salaries & Benefits $654,479
Fundraising Expenses $294,843
Program Expenses $3,899,500
Other Expenses $1,000,193
TOTAL EXPENSES $4,524,145

Year-over-Year Comparison

2024 2023 Change
Revenue $7,899,221 $2,578,841 +2.1%
Expenses $4,524,145 $4,738,635 0.0%
Net Income $3,375,076 $-2,159,794 -2.6%
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
18
Independent Members
16
Employees
4
Volunteers
50

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
7
$164,765
Total Directors
19
$122,000
Key Employees
0
$0
Highest Compensated
3
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
MEGHAN DONALDSON CEO 40.00
Officer Director
$110,000 $0 $110,000
KAREN NEWMAN CHAIR 24.00
Officer Director
$12,000 $0 $12,000
NANCY S WEXLER PHD PRESIDENT 1.00
Officer Director
$0 $0 $0
ANNE B YOUNG MD PHD VICE CHAIR 1.00
Officer Director
$0 $0 $0
BRUCE DONALDSON TREASURER 1.00
Officer Director
$0 $0 $0
ALICE WEXLER PHD SECRETARY 1.00
Officer Director
$0 $0 $0
C FRANK BENNETT PHD DIRECTOR 1.00
Director
$0 $0 $0
ROBI BLUMENSTEIN DIRECTOR 1.00
Director
$0 $0 $0
SANDY FOX DIRECTOR 1.00
Director
$0 $0 $0
TACIE FOX DIRECTOR 1.00
Director
$0 $0 $0
BERTA A GEHRY DIRECTOR 1.00
Director
$0 $0 $0
FRANK O GEHRY DIRECTOR 1.00
Director
$0 $0 $0
DAVID HOUSMAN PHD DIRECTOR 1.00
Director
$0 $0 $0
JOAN LEIMAN PHD DIRECTOR 1.00
Director
$0 $0 $0
HERBERT PARDES MD DIRECTOR (THROUGH 4/24) 1.00
Director
$0 $0 $0
LAUREN BAKER PINKUS DIRECTOR 1.00
Director
$0 $0 $0
LESLIE M THOMPSON PHD DIRECTOR 1.00
Director
$0 $0 $0
DAVID ZWALLY DIRECTOR 1.00
Director
$0 $0 $0
MELISSA MOSER DIRECTOR 1.00
Director
$0 $0 $0
TIM KELLEHER CFO 6.00
Officer
$42,765 $0 $42,765
SARAH HERNANDEZ DIR. OF RESEARCH PROGRAMS 40.00
Highest
$143,929 $55,917 $199,846
JULIE PORTER DIR. OF ADMINISTRATION 40.00
Highest
$116,065 $30,005 $146,070
ERICA MATISZ DIR. OF DEVELOPMENT 40.00
Highest
$108,500 $0 $108,500
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 No data No data No data No data
2024 $7,899,221 $4,524,145 $21,978,294 $3,375,076
2023 $2,578,841 $4,738,635 $18,234,308 $-2,159,794
2022 $4,522,686 $2,603,305 $16,776,193 $1,919,381
2021 $3,846,649 $2,967,624 $18,145,612 $879,025
2020 $4,059,819 $2,519,661 $15,507,063 $1,540,158
2019 $2,027,985 $2,301,831 $12,457,716 $-273,846
2018 $2,691,357 $2,137,659 $10,922,906 $553,698
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