HUNTINGTON STUDY GROUP LTD

EIN: 455557987 501(c)(3) Diseases & Disorders

ROCHESTER, NY

Total Revenue
$5,041,772
Total Expenses
$4,916,902
Total Assets
$8,061,578
Net Assets
$6,828,844
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2012
Legal Domicile
NY
Principal Officer
DANIEL CLAASSEN MD MS
Phone
8004877671
Tax Period
2024-01-01 to 2024-12-31

HUNTINGTON STUDY GROUP LTD, founded in 2012, is a community nonprofit in the Diseases & Disorders sector that reported $5.0M in total revenue in fiscal year 2024. Revenue fell 21% from the prior year — a significant decline worth monitoring.

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.

Program Service Accomplishments

Program 1
Expenses: $2,955,272 Revenue: $4,694,539

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...

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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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $347,233
Program Service Revenue $4,418,045
Investment Income $220,465
Other Revenue $56,029
TOTAL REVENUE $5,041,772

Expense Breakdown

Grants Paid $0
Salaries & Benefits $1,601,686
Fundraising Expenses $0
Program Expenses $2,955,272
Other Expenses $3,315,216
TOTAL EXPENSES $4,916,902

Year-over-Year Comparison

2024 2023 Change
Revenue $5,041,772 $6,359,880 -0.2%
Expenses $4,916,902 $6,564,085 -0.3%
Net Income $124,870 $-204,205 -1.6%
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
4
Independent Members
3
Employees
36
Volunteers
211

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
6
$679,642
Total Directors
6
$443,897
Key Employees
0
$0
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
JONI STEINMAN TREASURER (UNTIL NOV. 2024) 1.00
Officer Director
$0 $0 $0
SHARI KINEL JD CEO/SECRETARY (UNTIL 7/3/24) 40.00
Officer Director
$252,692 $29,571 $282,263
PETER SCHMIDT PHD CHAIR 1.00
Officer Director
$0 $0 $0
WILLIAM HOH VICE CHAIR 1.00
Officer Director
$0 $0 $0
ARVIND SREEDHARAN BOARD MEMBER 1.00
Director
$0 $0 $0
DANIEL CLAASSEN CEO (BEGIN 9/1/24) 40.00
Officer Director
$155,934 $5,700 $161,634
MICHAEL LENTINE CFO 40.00
Officer
$226,668 $9,077 $235,745
ANNE VAN DUSEN COO 40.00
Highest
$259,537 $20,080 $279,617
ELIZABETH DE BLIECK SR. DIR, PROJECT MANAGEMENT 40.00
Highest
$146,924 $7,268 $154,192
ELISE KAYSON-RUBIN VP OF CLINICAL OPERATIONS 40.00
Highest
$125,483 $11,231 $136,714
MELISSA AUSTIN DIR, CLINICAL OPERATIONS 40.00
Highest
$132,625 $27,848 $160,473
KELLEY MORGAN SR. PROJECT MANAGER 40.00
Highest
$121,595 $18,739 $140,334
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
2024 $5,041,772 $4,916,902 $8,061,578 $124,870
2023 $6,359,880 $6,564,085 $8,173,182 $-204,205
2022 $6,746,002 $6,756,731 $8,704,616 $-10,729
2021 $9,967,496 $9,091,521 $10,251,900 $875,975
2020 $11,167,411 $10,180,312 $7,657,910 $987,099
2019 $13,110,561 $12,788,592 $7,722,690 $321,969
2018 $9,752,778 $9,546,664 $5,832,539 $206,114
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