Program areas at National Tay-Sachs and Allied Diseases Association
Research: makes grants to scientists through a request for proposal process. These grants are for research projects that involve basic research, translational studies or clinical studies in the areas of neurodegenerative disorders affecting the central nervous system.
Education: develop and disseminate resources on tay-sachs, canavan, gm1, and sandhoff Diseases to affected individuals, families, and caregivers. Respond to inquiries. Host an annual family conference that includes family interaction, support sessions, and research updates by clinicians, researchers, and industry leaders. Consult with members of the scientific community.
Family services: provides support to, and advocate for, newly diagnosed families and individuals, families and caregivers actively caring for an affected loved one with tay-sachs, canavan, gm1, or sandhoff disease, and bereaved families and individuals. Connect patient community with researchers and industry partners. Facilitate private social media group for affected individuals, families, and caregivers.
Grants made by National Tay-Sachs and Allied Diseases Association
Who funds National Tay-Sachs and Allied Diseases Association
Grants from foundations and other nonprofits
Personnel at National Tay-Sachs and Allied Diseases Association
Name | Title | Compensation | Date of data |
---|
Kathleen M. Flynn | Chief Executive Officer | | 2023-02-13 |
Susan R Kahn | Executive Director | $114,968 | 2021-11-03 |
Susan Keliher | Director of Development and Communications | | 2023-02-13 |
Jon Lawrence, JD | Board Member | | 2023-02-13 |
Diana Jussila | Director of Family Services | | 2023-02-13 |
...and 11 more key personnel |
Financials for National Tay-Sachs and Allied Diseases Association
Revenues | FYE 06/2022 | FYE 06/2021 | % Change |
---|
Total grants, contributions, etc. | $896,290 | $1,165,390 | -23.1% |
Program services | $355,407 | $153,394 | 131.7% |
Investment income and dividends | $1,411 | $1,264 | 11.6% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $0 | $0 | - |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $1,253,108 | $1,320,048 | -5.1% |
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Prader-Willi Syndrome Association | USA (PWSA) | 501(c)(3) | Sarasota, FL | $1,719,245 |
Data update history
August 9, 2022
Posted financials
Added Form 990 for fiscal year 2021
May 22, 2022
Posted financials
Added Form 990 for fiscal year 2020
May 22, 2022
Used new vendors
Identified 4 new vendors, including , , , and
March 15, 2022
Updated personnel
Identified 4 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsTax deductible donations
General information
- Address
- 2001 Beacon St 204
- Brighton, MA 02135
- Metro area
- Boston-Cambridge-Newton, MA-NH
- Website URL
- ntsad.org/Â
- Phone
- (617) 277-4463
IRS details
- EIN
- 13-1912877
- Fiscal year end
- June
- Taxreturn type
- Form 990
- Year formed
- 1957
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G80: Specifically Named Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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