Public Charity

HUNTINGTON STUDY GROUP LTD

HUNTINGTON STUDY GROUP LTD is a Public Charity headquartered in ROCHESTER, NY. Financial data from the 2024 filing: $5.0M revenue, $4.9M expenses, $8.1M total assets. 1 publicly reported grants to this organization, totaling roughly $32K, appear in IRS filings.

EIN: 455557987 ROCHESTER, NY Birth Defects & Genetic Diseases NTEE: G20 Latest filing: 2024
Total Revenue$5.0M
Total Expenses$4.9M
Total Assets$8.1M
Grant Records1
Funding Total$32K
Filing Years2019–2024

Mission

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.

Where $100 goes at Huntington Study Group Ltd

How Huntington Study Group Ltd divides every $100 it spends, from its own Form 990 filings, averaged across 7 years.

$83 Programs the work itself
$17 Management running the organization
$0 Fundraising none reported

No fundraising costs are reported. That often means fundraising runs through a separate affiliated organization that files its own return.

Inside the $83 for programs

$83
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…
All program spending
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Source: Form 990 filings with the IRS, latest fiscal year 2024. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

COO Anne Van Dusen
BOARD MEMBER Arvind Sreedharan
CEO (BEGIN 9/1/24) Daniel Claassen
VP OF CLINICAL OPERATIONS Elise Kayson-Rubin
SR. DIR, PROJECT MANAGEMENT Elizabeth De Blieck
TREASURER (UNTIL NOV. 2024) Joni Steinman

Officer compensation and complete director data available with membership.

Top Grant Purposes

General Support
$32,000 1 grant

Financial Trends

Year Revenue Expenses Assets
2024 $5.0M $4.9M $8.1M
2023 $6.4M $6.6M $8.2M
2022 $6.7M $6.8M $8.7M
2020 $11.2M $10.2M $7.7M
2019 $13.1M $12.8M $7.7M

Between 2019 and 2024, reported annual revenue declined from $13.1M to $5.0M (-62%), with total assets most recently reported at $8.1M.

Interactive year-over-year charts and full filing details available with membership.

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