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Huntington Study Group Ltd

EIN 45-5557987 · Rochester, NY

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

LegitimacyPassesRegistration and standingFinancial healthGood79 out of 100GovernanceStrong93 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE HUNTINGTON STUDY GROUP (HSG) IS DEDICATED TO THE MISSION: TO SEEK TREATMENTS THAT MAKE A DIFFERENCE TO THOSE AFFECTED BY HUNTINGTON DISEASE. DESCRIPTION CONTINUED ON SCHEDULE O.SPECIFICALLY, THE HSG FOCUSES ON THE CONCEPTION, CONDUCT, ANALYSES, SCIENTIFIC REPORTING, AND COMMUNICATION OF CLINICAL RESEARCH, INCLUDING TREATMENT AND OBSERVATIONAL TRIALS, AIMED AT RELIEVING THE BURDENS AND SLOWING THE PROGRESSION OF HD. THE HSG 1) IDENTIFIES AND PRIORITIZES INITIATIVES THAT CAN HAVE AN IMPACT ON PATIENT CARE; 2) ADVANCES KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; AND 3) COLLABORATES WITH GOVERNMENT, FOUNDATIONS, INDUSTRY, AND THE HD COMMUNITY TO EFFECTIVELY PLAN, EXECUTE AND DISSEMINATE RESEARCH AND NEW KNOWLEDGE RELATED TO HD.

Income
$5.0 million
Spending
$4.9 million
Spent on programs
60%
Reserves
16.6 months of spending
Largest source of income
fees for its services, 88%
Employees
36
Volunteers
211
Highest pay
$282,263, ceo/secretary (until 7/3/24)

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 79 out of 100. Higher than 48% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 16.6 months of spending.

  • Debt

    16 of 20

    It owes 15% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 2% of income.

  • Income trend

    5 of 15

    Income fell 21% on the year before.

  • Spending floor

    8 of 15

    60% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 93 out of 100. Higher than 50% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    18 of 25

    3 of 4 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, 2024, 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. $3.0 million spent. THE HSG IS A NETWORK OF CLINICIANS, RESEARCH INVESTIGATORS, SCIENTISTS AND HUNTINGTON DISEASE (HD) EXPERTS, LARGELY FROM ACADEMIC/RESEARCH INSTITUTIONS WORLDWIDE WORKING TOGETHER WITH A VARIETY OF SPONSORS (GOVERNMENT, INDUSTRY, FOUNDATION) TO DEVELOP TREATMENTS THAT MAKE A DIFFERENCE FOR HD PATIENTS AND FAMILIES. WE PARTNER WITH HD CARE AND ADVOCACY GROUPS IN ORDER TO FULFILL OUR MISSION MOST EFFECTIVELY.DESCRIPTION CONTINUED ON SCHEDULE O.THE HSG HAS CARRIED OUT COOPERATIVE THERAPEUTIC RESEARCH SINCE 1993, BEGINNING WITH THE DEVELOPMENT OF THE UNIFIED HUNTINGTON'S DISEASE RATING SCALE (UHDRS) AND LONGITUDINAL DATABASE. THE HSG, THROUGH CLINICAL TRIALS, HAS BROUGHT THE ONLY TWO FDA-APPROVED HD TREATMENTS (TETRABENAZINE AND DUTETRABENAZINE) TO MARKET. WE CONTINUE TO SERVE OUR CONSTITUENTS THROUGH CLINICAL RESEARCH STUDIES. THE HSG HAS PARTNERED WITH PHARMACEUTICAL COMPANIES, PRIVATE FOUNDATIONS, THE NATIONAL INSTITUTES OF HEALTH (NIH), AND THE FDA ORPHAN DRUG PRODUCTS DIVISIONS IN DEVELOPING AND CONDUCTING TRIALS AND OBSERVATIONAL STUDIES.THE HSG IS COMMITTED TO 1) ADVANCE KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; 2) DEVELOPMENT, ACCESS TO, AND MAINTENANCE OF STUDY DATABASES; 3) FULL DISCLOSURE OF RESEARCH RESULTS IN SCIENTIFIC JOURNALS AFTER INDEPENDENT EXPERT REVIEW; 4) PROTECTION AGAINST CONFLICT OF INTEREST; 5) UNIFORM CONTRACTING AND SUB-CONTRACTING ACROSS ALL RESEARCH SITES; AND 6) DEMOCRATIC GOVERNANCE OF ITS ORGANIZATIONS AND ACTIVITIES.

Source: Form 990 for the year ending December 31, 2024, 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 October 13, 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 October 13, 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 October 13, 2026.

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

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

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

    Recognized by the IRS since March 2013.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 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 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.