Huntington Study Group Ltd
- Assets
- $8.7m
- Revenue
- $6.7m
- Investments
- $0.0
- Employees
- 25
- Location
- Rochester, NY
- Founding
- 03/2013
- Data as of
- 12/2022
- EIN
- 45-5557987
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 12/2022, Huntington Study Group Ltd employed 25 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 12/2022, Huntington Study Group Ltd generated $6.7m in total revenue. The organization has seen a slow decline revenue. Over the past 8 years, revenues have fallen by an average of (1.4%) each year. All expenses for the organization totaled $6.8m during the year ending 12/2022. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
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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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Joni Steinman Treasurer | OfficerTrustee | 1 | $16,000 |
Shari Kinel JD Ceo/secretary | OfficerTrustee | 40 | $235,111 |
Peter Schmidt PHD Chair | OfficerTrustee | 1 | $0 |
William Hoh Vice Chair | OfficerTrustee | 1 | $0 |
Arvind Sreedharan Board Member | Trustee | 1 | $0 |
Michael Lentine CFO | Officer | 40 | $144,707 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
University Of Rochester Chetcctc Clinical Trial Services | 12/30/22 | $1,235,546 |
University Of Texas Health Science Ctr Clinical Trial Services | 12/30/22 | $310,732 |
Hereditary Neurological Disease Centre Clinical Trial Services | 12/30/22 | $233,921 |
Grand Hyatt Tampa Bay Conference Services | 12/30/22 | $230,393 |
Vanderbilt University Clinical Trial Services | 12/30/22 | $220,116 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $406,855 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $406,855 |
| Total Program Service Revenue | $6,190,676 |
| Investment income | $111,436 |
| 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 | $6,746,002 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $430,772 |
| Compensation of current officers, directors, key employees. | $430,772 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $898,882 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $62,787 |
| Payroll taxes | $172,611 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $20,017 |
| Fees for services: Accounting | $14,750 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $429,624 |
| Advertising and promotion | $32,035 |
| Office expenses | $27,746 |
| Information technology | $254,949 |
| Royalties | $0 |
| Occupancy | $29,400 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $46,233 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $8,651 |
| Insurance | $122,992 |
| All other expenses | -$224,167 |
| Total functional expenses | $6,756,731 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $959,199 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $1,771,278 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $79,679 |
| Net Land, buildings, and equipment | $33,257 |
| Investments—publicly traded securities | $4,042,871 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,818,332 |
| Total assets | $8,704,616 |
| Accounts payable and accrued expenses | $1,349,107 |
| Grants payable | $0 |
| Deferred revenue | $1,434,643 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $2,783,750 |
| Net assets without donor restrictions | $5,920,866 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $8,704,616 |
Grants Awarded
Over the last fiscal year, Huntington Study Group Ltd has awarded $79,792 in support to 5 organizations.
| Grant Recipient | Amount |
|---|---|
DR DANIEL CLAASSEN VANDERBILT UNIVERSITY PURPOSE: SEED FUND GRANT | $6,500 |
HUNTINGTON'S DISEASE YOUTH ORGANIZATION PURPOSE: SEED FUND GRANT | $10,000 |
REGENTS OF THE UNIVERSITY OF CAROLINA IRVINE PURPOSE: SEED FUND GRANT | $51,792 |
UNIVERSITY OF ROCHESTER DEPARTMENT OF NEUROLOGY PURPOSE: SEED FUND GRANT | $6,500 |
REGENTS OF THE UNIVERSITY OF MICHIGAN PURPOSE: SEED FUND GRANT | $5,000 |