Program areas at HSG
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.
Who funds Huntington Study Group (HSG)
Grants from foundations and other nonprofits
Grantmaker | Grantmaker tax period | Description | Amount |
---|
Chdi Foundation | 2023-10 | Support for Annual Meeting | $25,601 |
Personnel at HSG
Name | Title | Compensation | Date of data |
---|
Anne Van Dusen, CHC | Interim Chief Executive Officer and Chief Operating Officer | | 2024-08-14 |
Daniel Claassen | Chief Executive Officer | | 2025-01-03 |
Anne Van Dusen | Chief Operating Officer | $157,245 | 2025-01-03 |
Michael Lentine | Chief Financial Officer | $144,707 | 2025-01-03 |
Kristin Keyes | Chief of Staff | | 2025-01-03 |
...and 17 more key personnel |
Financials for HSG
Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
---|
Total grants, contributions, etc. | $507,661 | $406,855 | 24.8% |
Program services | $5,650,926 | $6,190,676 | -8.7% |
Investment income and dividends | $149,088 | $111,436 | 33.8% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $0 | $0 | - |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $52,205 | $37,035 | 41% |
Total revenues | $6,359,880 | $6,746,002 | -5.7% |
Organizations like HSG
Organization | Type | Location | Revenue |
---|
Children's Tumor Foundation | 501(c)(3) | New York, NY | $16,447,289 |
National Down Syndrome Society (NDSS) | 501(c)(3) | Washington, DC | $3,354,289 |
Parent Project Muscular Dystrophy (PPMD) | 501(c)(3) | Washington, DC | $13,881,085 |
Foundation for Sarcoidosis Research (FSR) | 501(c)(3) | Chicago, IL | $2,574,104 |
National Bleeding Disorders Foundation | 501(c)(3) | New York, NY | $19,047,848 |
Global Down Syndrome Foundation | 501(c)(3) | Denver, CO | $3,826,365 |
Association for Frontotemporal Degeneration (AFTD) | 501(c)(3) | King of Prussia, PA | $13,139,120 |
National Ataxia Foundation Incorporated | 501(c)(3) | Minneapolis, MN | $3,981,625 |
Spina Bifida Association of America | 501(c)(3) | Arlington, VA | $2,834,510 |
Hemophilia of Georgia (HoG) | 501(c)(3) | Sandy Springs, GA | $28,674,349 |
Data update history
January 3, 2025
Updated personnel
Identified 1 new personnel
December 31, 2024
Used new vendors
Identified 1 new vendor, including
October 21, 2024
Received grants
Identified 1 new grant, including a grant for $25,601 from Chdi Foundation August 14, 2024
Updated personnel
Identified 9 new personnel
January 19, 2024
Posted financials
Added Form 990 for fiscal year 2022
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchCommunity engagement / volunteeringTax deductible donationsAccepts online donations
General information
- Address
- 95 Allens Creek Bldg 1 132
- Rochester, NY 14618
- Metro area
- Rochester, NY
- County
- Monroe County, NY
- Website URL
- huntingtonstudygroup.org/Â
- Phone
- (800) 487-7671
- Facebook page
- huntingtonsgÂ
- Twitter profile
- @huntingtonsgÂ
IRS details
- EIN
- 45-5557987
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 2012
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G20: Birth Defects and Genetic Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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