Program areas at HDSA
Research - supports research as advised by its scientific advisory board. The research projects are involved in finding cures and treatments for Huntington's Disease.
Community outreach - provides workshops, seminars, and symposiums on Huntington's Disease through a network of chapter affiliates and branches throughout the united states.
Patient and family services - provides counseling and referral services to patients with Huntington's Disease and their families.
Education provides information and education through publication and distribution of newsletters, brochures and science updates
Who funds Huntington's Disease Society of America (HDSA)
Grants from foundations and other nonprofits
Personnel at HDSA
| Name | Title | Compensation | Date of data |
|---|
| Arik Johnson | Interim Chief Executive Officer | $203,067 | 2024-11-12 |
| Louise Vetter | President and Chief Executive Officer | $370,302 | 2024-04-23 |
| Rosemary Coluccio | Chief Operating Officer | $260,173 | 2024-04-23 |
| Jamison Skala | Chief Development Officer | $173,121 | 2024-04-23 |
| Rebecca Chan | Director of Finance | $112,876 | 2024-04-23 |
| ...and 11 more key personnel |
Financials for HDSA
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $9,341,469 | $10,470,080 | -10.8% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $148,433 | $29,874 | 396.9% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $-131 | $-346 | 62.1% |
| Net income from fundraising events | $0 | $0 | - |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $344,165 | $210,357 | 63.6% |
| Total revenues | $9,833,936 | $10,709,965 | -8.2% |
Organizations like HDSA
| Organization | Type | Location | Revenue |
|---|
| National Down Syndrome Society (NDSS) | 501(c)(3) | Washington, DC | $3,354,289 |
| National Bleeding Disorders Foundation | 501(c)(3) | New York, NY | $19,047,848 |
| Children's Tumor Foundation | 501(c)(3) | New York, NY | $16,447,289 |
| Epilepsy Foundation | 501(c)(3) | Bowie, MD | $17,841,214 |
| National Ataxia Foundation Incorporated | 501(c)(3) | Minneapolis, MN | $3,981,625 |
| American Parkinson Disease Association (APDA) | 501(c)(3) | Staten Island, NY | $23,361,566 |
| Hydrocephalus Association (HA) | 501(c)(3) | Bethesda, MD | $3,628,383 |
| Association for Frontotemporal Degeneration (AFTD) | 501(c)(3) | King of Prussia, PA | $13,139,120 |
| Down Syndrome Association of Wisconsin | 501(c)(3) | West Allis, WI | $6,693,318 |
| Camp Simcha | 501(c)(3) | New York, NY | $30,680,827 |
Data update history
February 10, 2025
Updated personnel
Identified 1 new personnel
January 13, 2025
Used new vendors
Identified 3 new vendors, including , , and
January 7, 2025
Received grants
Identified 13 new grant, including a grant for $90,000 from Chdi Foundation January 3, 2025
Posted financials
Added Form 990 for fiscal year 2023
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringGala fundraisersFundraising races, competitions, and tournamentsTax deductible donationsAccepts online donations
General information
- Address
- 505 Eighth Ave Suite 1402
- New York, NY 10018
- Metro area
- New York-Newark-Jersey City, NY-NJ-PA
- County
- New York County, NY
- Website URL
- hdsa.org/Â
- Phone
- (212) 242-1968
IRS details
- EIN
- 13-3349872
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1986
- 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
- Parent of group exemption
- Central organization
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current
- FTB status revoked
- Not revoked
- AG Registration Number
- 066267
- FTB Entity ID
- 1588853
- AB 488 data last updated ("as-of") date
- 2025-03-19
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