Nonprofit · EIN 45-5557987
HUNTINGTON STUDY GROUP LTD
Tax-exempt · ROCHESTER, NY 14618
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $5,041,772 | $4,916,902 | $124,870 | $8,061,578 | $1,232,734 | $6,828,844 |
| December 31, 2023 | 990 | $6,359,880 | $6,564,085 | -$204,205 | $8,173,182 | $1,899,350 | $6,273,832 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $347,233
- Program service revenue
- $4,418,045
- Investment income
- $220,465
- Other revenue
- $56,029
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $679,642
- Other salaries and wages
- $687,517
- Salaries, compensation and benefits (total)
- $1,601,686
- Professional fundraising fees
- $0
- Legal fees
- $57,443
- Accounting fees
- $16,000
- Occupancy
- $29,400
- Depreciation
- $10,004
- Program services (functional)
- $2,955,272
- Management and general (functional)
- $1,961,630
Balance sheet and other
- Total assets, start of year
- $8,173,182
- Total assets, end of year
- $8,061,578
- Total liabilities, end of year
- $1,232,734
- Net assets, end of year
- $6,828,844
- Land, buildings and equipment
- $32,893
- Publicly traded securities
- $6,332,571
- Net assets without donor restrictions
- $6,828,844
- Gross receipts
- $5,041,772
- Employees
- 36
- Volunteers
- 211
- Year formed
- 2012
- State of legal domicile
- NY
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SHARI KINEL JD | CEO/SECRETARY (UNTIL 7/3/24) Trustee or director, Officer | 40 | $252,692 | $29,571 |
| ANNE VAN DUSEN | COO Highest-paid employee | 40 | $259,537 | $20,080 |
| MICHAEL LENTINE | CFO Officer | 40 | $226,668 | $9,077 |
| DANIEL CLAASSEN | CEO (BEGIN 9/1/24) Trustee or director, Officer | 40 | $155,934 | $5,700 |
| MELISSA AUSTIN | DIR, CLINICAL OPERATIONS Highest-paid employee | 40 | $132,625 | $27,848 |
| ELIZABETH DE BLIECK | SR. DIR, PROJECT MANAGEMENT Highest-paid employee | 40 | $146,924 | $7,268 |
| KELLEY MORGAN | SR. PROJECT MANAGER Highest-paid employee | 40 | $121,595 | $18,739 |
| ELISE KAYSON-RUBIN | VP OF CLINICAL OPERATIONS Highest-paid employee | 40 | $125,483 | $11,231 |
| JONI STEINMAN | TREASURER (UNTIL NOV. 2024) Trustee or director, Officer | 1 | $0 | $0 |
| PETER SCHMIDT PHD | CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| WILLIAM HOH | VICE CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| ARVIND SREEDHARAN | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
990 for the year ended December 31, 2023: 11 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SHARI KINEL JD | CEO/SECRETARY Trustee or director, Officer | 40 | $250,076 | $28,861 |
| ELISE KAYSON-RUBIN | VP OF CLINICAL OPERATIONS Highest-paid employee | 40 | $211,860 | $21,178 |
| BRETT KINSLER | CHIEF INNOVATION OFFICER Highest-paid employee | 40 | $189,263 | $16,915 |
| ANNE VAN DUSEN | COO Highest-paid employee | 40 | $163,403 | $17,310 |
| MICHAEL LENTINE | CFO Officer | 40 | $151,605 | $16,870 |
| ELIZABETH DE BLIECK | DIR OF PROJECT MANAGEMENT Highest-paid employee | 40 | $139,484 | $17,873 |
| JODY GOLDSTEIN | DIR OF CLINICAL OPERATIONS Highest-paid employee | 40 | $140,558 | $16,512 |
| JONI STEINMAN | TREASURER Trustee or director, Officer | 1 | $16,000 | $0 |
| PETER SCHMIDT PHD | CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| WILLIAM HOH | VICE CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| ARVIND SREEDHARAN | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 95 ALLENS CREEK RD STE 132 # BDG1, ROCHESTER, NY 14618-3255
- In care of
- % SHARI KINEL
- Principal officer (990 for 2024)
- DANIEL CLAASSEN MD MS, 95 ALLENS CREEK BLDG 1 132, ROCHESTER, NY 14618
- Signed the 990
- MICHAEL LENTINE, CFO
- Phone
- (800) 487-7671
- Website
- WWW.HUNTINGTONSTUDYGROUP.ORG
- Return prepared by
- EFPR GROUP CPAS PLLC
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 accomplishments
- 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.Expenses $2,955,272 · revenue $4,694,539
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 45-5557987
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2013
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G20)
- Assets (IRS master file)
- $8,061,578
- Income (IRS master file)
- $5,041,772
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $5,041,772 | $4,916,902 | $8,061,578 | XML |
| 990 | December 2023 | $6,359,880 | $6,564,085 | $8,173,182 | XML |
| 990 | December 2022 | $6,746,002 | $6,756,731 | $8,704,616 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990 | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 45-5557987).
Questions about HUNTINGTON STUDY GROUP LTD
- What is the EIN of HUNTINGTON STUDY GROUP LTD?
- The employer identification number (EIN) of HUNTINGTON STUDY GROUP LTD is 45-5557987.
- Is HUNTINGTON STUDY GROUP LTD tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2013.
- Are donations to HUNTINGTON STUDY GROUP LTD tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does HUNTINGTON STUDY GROUP LTD file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of HUNTINGTON STUDY GROUP LTD due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did HUNTINGTON STUDY GROUP LTD last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of HUNTINGTON STUDY GROUP LTD?
- The 990 for the year ended December 31, 2024 names DANIEL CLAASSEN MD MS.
- Who are the officers and directors of HUNTINGTON STUDY GROUP LTD?
- The 990 for the year ended December 31, 2024 lists 12 people; 8 received compensation from the organization, the highest $252,692 (SHARI KINEL JD, CEO/SECRETARY (UNTIL 7/3/24)).
- How much revenue does HUNTINGTON STUDY GROUP LTD have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $5,041,772, expenses of $4,916,902 and total assets of $8,061,578 at year end.
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