Huntingtons Disease Society Of America Inc
- Assets
- $17.4m
- Revenue
- $10.7m
- Investments
- $0.0
- Employees
- 34
- Location
- New York, NY
- Founding
- 02/1988
- Data as of
- 12/2022
- EIN
- 13-3349872
Organization Overview
Huntingtons Disease Society Of America Inc is located in New York, NY. The organization was established in 1988. 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, Huntingtons Disease Society Of America Inc employed 34 individuals. This organization is a parent organization of an affiliated group for tax-exemption purposes. Huntingtons Disease Society Of America Inc 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, Huntingtons Disease Society Of America Inc generated $10.7m in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 2.9% each year. All expenses for the organization totaled $9.4m during the year ending 12/2022. While expenses have increased by 3.7% per year over the past 8 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.
Since 2015, Huntingtons Disease Society Of America Inc has awarded 401 individual grants totaling $15,141,049. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE.
EDUCATION PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION AND DISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES
PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.
COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Victor Sung MD Chair | OfficerTrustee | 6 | $0 |
Teresa Srajer Chair-Elect | OfficerTrustee | 6 | $0 |
Kamran Alam Treasurer | OfficerTrustee | 6 | $0 |
Jenne Coler-Dark Secretary | OfficerTrustee | 6 | $0 |
Ej Garner Past Chair | OfficerTrustee | 6 | $0 |
Angela Allen Trustee | Trustee | 6 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Atlanta Marriott Marquis Convention | 12/30/22 | $463,025 |
Libshap Realty Corporation Realty | 12/30/22 | $312,607 |
J&r Graphics Graphic Design | 12/30/22 | $121,314 |
Thorn Run Partners Llc Advocacy | 12/30/22 | $120,000 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $159,323 |
| Membership dues | $0 |
| Fundraising events | $1,528,078 |
| Related organizations | $3,003,678 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $5,779,001 |
| Noncash contributions included in lines 1a–1f | $356,476 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $10,470,080 |
| Total Program Service Revenue | $0 |
| Investment income | $29,874 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$346 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $10,709,965 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $2,561,069 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $374,995 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $2,982,377 |
| Pension plan accruals and contributions | $117,667 |
| Other employee benefits | $460,585 |
| Payroll taxes | $256,145 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $116,238 |
| Fees for services: Accounting | $64,481 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $996 |
| Fees for services: Other | $577,439 |
| Advertising and promotion | $0 |
| Office expenses | $168,116 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $284,948 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $421,886 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $24,601 |
| Insurance | $61,668 |
| All other expenses | $425,939 |
| Total functional expenses | $9,418,102 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $0 |
| Savings and temporary cash investments | $11,978,915 |
| Pledges and grants receivable | $605,970 |
| Accounts receivable, net | $0 |
| 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 | $182,670 |
| Net Land, buildings, and equipment | $16,437 |
| Investments—publicly traded securities | $3,920,368 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $715,351 |
| Total assets | $17,419,711 |
| Accounts payable and accrued expenses | $453,833 |
| Grants payable | $980,273 |
| Deferred revenue | $1,200 |
| 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 | $797,692 |
| Total liabilities | $2,232,998 |
| Net assets without donor restrictions | $11,643,008 |
| Net assets with donor restrictions | $3,543,705 |
| 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 | $17,419,711 |
Grants Awarded
Over the last fiscal year, Huntingtons Disease Society Of America Inc has awarded $2,346,833 in support to 63 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF CALIFORNIA SAN DIEGO PURPOSE: COMMUNITY SERVICES | $49,000 |
OHIO STATE UNIVERSITY WEXNER MEDICAL CENTER PURPOSE: COMMUNITY SERVICES | $49,000 |
ADVENTHEALTH FOUNDATION CENTRAL FLORIDA PURPOSE: COMMUNITY SERVICES | $6,500 |
OREGON HEALTH & SCIENCE UNIVERSITY PURPOSE: COMMUNITY SERVICES | $19,500 |
TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA PURPOSE: COMMUNITY SERVICES | $49,000 |
UNIVERSITY OF PITTSBURGH PHYSICIANS PURPOSE: COMMUNITY SERVICES | $38,500 |