EIN 45-5557987

Huntington Study Group (HSG)

IRS 501(c) type
501(c)(3)
Num. employees
25
Year formed
2012
Most recent tax filings
2022-12-01
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
$6,746,002
2022
Total expenses
$6,756,731
2022
Total assets
$8,704,616
2022
Num. employees
25
2022

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$15,000
AmazonSmile FoundationGeneral Support$5

Personnel at HSG

NameTitleCompensation
Shari KinelChief Executive Officer$235,111
Anne van DusenChief Operating Officer / Director of Operations / Director of Education and Special Programs$157,245
Michael LentineChief Financial Officer / Director of Finance$144,707
Elise KaysonBoard Member$200,056
Jody GoldsteinDirector, Clinical$140,507
...and 14 more key personnel

Financials for HSG

RevenuesFYE 12/2022
Total grants, contributions, etc.$406,855
Program services$6,190,676
Investment income and dividends$111,436
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$37,035
Total revenues$6,746,002

Form 990s for HSG

Fiscal year endingDate received by IRSFormPDF link
2022-122023-11-14990View PDF
2021-122022-11-15990View PDF
2020-122021-11-15990View PDF
2019-122021-03-02990View PDF
2018-122020-01-24990View PDF
...and 6 more Form 990s
Data update history
January 19, 2024
Posted financials
Added Form 990 for fiscal year 2022
January 17, 2024
Updated personnel
Identified 1 new personnel
December 28, 2023
Used new vendors
Identified 1 new vendor, including
October 25, 2023
Received grants
Identified 1 new grant, including a grant for $15,000 from Chdi Foundation
July 25, 2023
Updated personnel
Identified 3 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchTax deductible donations
General information
Address
95 Allens Creek Bldg 1 132
Rochester, NY 14618
Metro area
Rochester, 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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