EIN 45-5557987

Huntington Study Group (HSG)

IRS 501(c) type
501(c)(3)
Num. employees
27
Year formed
2012
Most recent tax filings
2023-12-01
Description
The Huntington Study Group (HSG), which was formed in 1993, is the world's first HD cooperative therapeutic research organization. To be an invaluable research partner to Families, HSG Members, Sponsors, and Partners.
Total revenues
$6,359,880
2023
Total expenses
$6,564,085
2023
Total assets
$8,173,182
2023
Num. employees
27
2023

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.

Grants made by HSG

GranteeGrant descriptionAmount
Regents of the University of California at IrvineSeed Fund Grant$51,792
Huntington's Disease Youth Organization of AmericaSeed Fund Grant$10,000
University of RochesterSeed Fund Grant$6,500
...and 2 more grants made

Who funds Huntington Study Group (HSG)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Chdi FoundationSupport for Annual Meeting$25,601

Personnel at HSG

NameTitleCompensation
Anne Van Dusen, CHCInterim Chief Executive Officer and Chief Operating Officer
Daniel ClaassenChief Executive Officer
Anne Van DusenChief Operating Officer$157,245
Michael LentineChief Financial Officer$144,707
Kristin KeyesChief of Staff
...and 17 more key personnel

Financials for HSG

RevenuesFYE 12/2023
Total grants, contributions, etc.$507,661
Program services$5,650,926
Investment income and dividends$149,088
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$52,205
Total revenues$6,359,880

Form 990s for HSG

Fiscal year endingDate received by IRSFormPDF link
2023-122024-11-15990View PDF
2022-122023-11-14990View PDF
2021-122022-11-15990View PDF
2020-122021-11-15990View PDF
2019-122021-03-02990View PDF
...and 7 more Form 990s
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/ 
Phone
(800) 487-7671
Facebook page
huntingtonsg 
Twitter profile
@huntingtonsg 
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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