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Huntington S Disease Foundation

EIN 23-7376197 · New York, NY

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood74 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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

Income
$4.1 million
Spending
$4.3 million
Spent on programs
88%
Reserves
12 months of spending
Largest source of income
donations and private grants, 80%
Employees
4
Volunteers
45
Highest pay
$216,927, dir. of research programs

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 74 out of 100. Higher than 36% of charities in its peer group (medical research, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 12.0 months of spending.

  • Debt

    20 of 20

    It owes 10% of what it owns.

  • Living within its means

    4 of 15

    Spending exceeded income by 6% of income.

  • Income trend

    0 of 15

    Income fell 48% on the year before.

  • Spending floor

    15 of 15

    88% of spending went to programs and raising each dollar of donations cost 8 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 63% of charities in its peer group (medical research, $1m to $10m).

  • Independent board

    25 of 25

    15 of 17 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (1)
  1. $3.8 million spent. HUNTINGTON'S 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 HUNTINGTON'S 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since June 1974.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.

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