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Compensation 990 is an independent service that uses public IRS Form 990 filings as its source data. We clean and standardize this information, but the original filings may contain errors or omissions. Years on this site refer to the organization’s fiscal year end date on the filing.

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Organizations Diseases, Disorders & Medical Huntington Study Group Ltd.

Huntington Study Group Ltd.

Fiscal year ending 2022. Filed on November 14, 2023.

95 Allens Creek Bldg 1 132
Rochester, New York 14618

Huntington Study Group Ltd. (EIN: 45-5557987) has filed an IRS Form 990 since at least fiscal year 2016. In its fiscal year 2022 IRS Form 990 filing, Huntington Study Group Ltd., a 501(c)(3) charitable organization, reported compensation for 7 out of 25 total employees. Among the employees shown here, the average compensation is $184,282. The highest compensated employee at Huntington Study Group Ltd. is Shari Kinel, Jd with fiscal year 2022 compensation of $256,547.

Revenue, expenses, and employee compensation

Revenue

$6,746,002

Expenses

$6,756,731

Employee compensation

$1,565,052
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Shari Kinel, Jd
Chief Executive Officer and Secretary
$256,547
$235,111 No related comp$21,436
Elise Kayson
Vice President, Clinical Operations
$216,171
$200,056 No related comp$16,115
Anne van Dusen
Chief Operating Officer
$178,223
$157,245 No related comp$20,978
Jeffrey Mann
Director of Quality Assurance
$167,378
$137,784 No related comp$29,594
Elizabeth A de Blieck
Director of Project Management
$159,321
$139,533 No related comp$19,788
Michael Lentine
Chief Financial Officer
$158,225
$144,707 No related comp$13,518
Jody Goldstein
Director of Clinical Operations
$154,107
$140,507 No related comp$13,600

Benchmark Employee Compensation

Non-Employee Board Members

Joni Steinman
Treasurer
$16,000
$16,000 No related compNo other comp
Arvind Sreedharan
Board Member
No compensation reported
William Hoh
Vice Chair
No compensation reported
Peter Schmidt, Ph.D.
Chair
No compensation reported

Contractors

University of Rochester Chetcctc
Clinical Trial
$1,235,546
University of Texas Health Science Center
Clinical Trial
$310,732
Hereditary Neurological Disease Centre
Clinical Trial
$233,921
Grand Hyatt Tampa Bay
Conference
$230,393
Vanderbilt University
Clinical Trial
$220,116

Mission Statement

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.

Revisions to this organization profile

September 22, 2025:
2024 Huntington Study Group Ltd. 990 filed
November 15, 2024:
2023 Huntington Study Group Ltd. 990 filed
November 14, 2023:
2022 Huntington Study Group Ltd. 990 filed

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