EIN 13-1912877

National Tay-Sachs and Allied Diseases Association

IRS 501(c) type
501(c)(3)
Num. employees
7
Year formed
1957
Most recent tax filings
2022-06-01
Description
The mission of the national-tay sachs & Allied Diseases Association is to lead the fight to treat and cure tay-sachs, canavan and related genetic Diseases and to support affected families and individuals in leading fuller lives.
Total revenues
$1,253,108
2022
Total expenses
$770,790
2022
Total assets
$3,116,145
2022
Num. employees
7
2022

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

GranteeGrant descriptionAmount
University of MassachusettsLysosomal Storage Disease Research$0
General Hospital CorporationLysosomal Storage Disease Research$0

Who funds National Tay-Sachs and Allied Diseases Association

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Dreiseszun Family FoundationFocus on Funding Research, Supporting Over 500 Families and Individuals Worldwide, and Raising Awareness To Prevent Disease$25,000
Greater Washington Community FoundationGeneral Support$25,000
ImpactAssetsGeneral Support$16,000
...and 14 more grants received

Personnel at National Tay-Sachs and Allied Diseases Association

NameTitleCompensation
Kathleen M. FlynnChief Executive Officer
Susan R KahnExecutive Director$114,968
Susan KeliherDirector of Development and Communications
Jon Lawrence, JDBoard Member
Diana JussilaDirector of Family Services
...and 11 more key personnel

Financials for National Tay-Sachs and Allied Diseases Association

RevenuesFYE 06/2022
Total grants, contributions, etc.$896,290
Program services$355,407
Investment income and dividends$1,411
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$1,253,108

Form 990s for National Tay-Sachs and Allied Diseases Association

Fiscal year endingDate received by IRSFormPDF link
2021-062021-11-03990View PDF
2020-062021-04-13990View PDF
2019-062020-09-03990View PDF
2018-062019-06-19990View PDF
2017-062018-05-14990View PDF
...and 8 more Form 990s
Data update history
August 9, 2022
Posted financials
Added Form 990 for fiscal year 2021
August 2, 2022
Received grants
Identified 6 new grant, including a grant for $25,000 from Dreiseszun Family Foundation
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/ 
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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