Huntington Study Group Ltd

Organization Overview

Huntington Study Group Ltd is located in Rochester, NY. The organization was established in 2013. According to its NTEE Classification (G20) the organization is classified as: Birth Defects & Genetic Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Huntington Study Group Ltd employed 20 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Huntington Study Group Ltd is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Huntington Study Group Ltd generated $10.0m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 4.0% each year. All expenses for the organization totaled $9.1m during the year ending 12/2021. While expenses have increased by 5.2% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

SEE SCHEDULE O FOR ORGANIZATION'S MISSION AND MOST SIGNIFICANT ACTIVITIES.THE ORGANIZATION AIMS TO ADVANCE KNOWLEDGE ABOUT THE CAUSE(S), DISEASE PROGRESSION AND TREATMENT OF HUNTINGTON DISEASE AND RELATED DISORDERS.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


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Outside Vendors & Contractors

Vendor Name (Service)Compensation
University Of Rochester Chetcctc
Clinical Trial Services
$2,780,341
Beth Israel Deaconess Medical Center
Clinical Trial Services
$137,987
University Of Texas Health Science Ctr
Clinical Trial Services
$461,384
Hereditary Neurological Disease Centre
Clinical Trial Services
$381,516
University Of Florida
Clinical Trial Services
$127,470
View All Vendors

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $134,020
All other contributions, gifts, grants, and similar amounts not included above$288,089
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$422,109
Total Program Service Revenue$9,308,123
Investment income $128,373
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $9,967,496

Grants Awarded

Over the last fiscal year, Huntington Study Group Ltd has awarded $79,792 in support to 5 organizations.

Grant RecipientAmount

REGENTS OF THE UNIVERSITY OF CAROLINA IRVINE

Org PageRecipient Profile

Irvine, CA

PURPOSE: SEED FUND GRANT

$51,792

HUNTINGTON'S DISEASE YOUTH ORGANIZATION

Org PageRecipient Profile

Livonia, MI

PURPOSE: SEED FUND GRANT

$10,000

DR DANIEL CLAASSEN VANDERBILT UNIVERSITY

Org PageRecipient Profile

Nashville, TN

PURPOSE: SEED FUND GRANT

$6,500

UNIVERSITY OF ROCHESTER DEPARTMENT OF NEUROLOGY

Org PageRecipient Profile

Rochester, NY

PURPOSE: SEED FUND GRANT

$6,500

REGENTS OF THE UNIVERSITY OF MICHIGAN

Org PageRecipient Profile

Ann Arbor, MI

PURPOSE: SEED FUND GRANT

$5,000
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 1 grants that Huntington Study Group Ltd has recieved totaling $12.

Awarding OrganizationAmount
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$12
View Grant Recipient Profile

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