National Tay Sachs & Allied Diseases Association Inc

Organization Overview

National Tay Sachs & Allied Diseases Association Inc is located in Brighton, MA. The organization was established in 1959. As of 06/2022, National Tay Sachs & Allied Diseases Association Inc employed 7 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Tay Sachs & Allied Diseases Association 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 06/2022, National Tay Sachs & Allied Diseases Association Inc generated $1.3m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 4.3% each year. All expenses for the organization totaled $770.8k during the year ending 06/2022. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, National Tay Sachs & Allied Diseases Association Inc has awarded 110 individual grants totaling $1,731,095. 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.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2022

Describe the Organization's Mission:

Part 3 - Line 1

TO DETECT, PREVENT AND RESEARCH TAY-SACHS AND ALLIED DISEASES. THE ORGANIZATION ALSO PROVIDES SERVICES TO FAMILIES AND CHILDREN THAT ARE LIVING WITH THE DISEASES.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


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.


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.


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Board, Officers & Key Employees

Name (title)Compensation
Susan Kahn
Former Executive Director
$118,976
Blyth Lord
Director
$0
Staci Kallish
President
$0
Lisajane Romer
Secretary
$0
Oralea Marquardt
Vice President
$0
Michael Richards
Treasurer
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$126,321
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$769,969
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$896,290
Total Program Service Revenue$355,407
Investment income $1,411
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 $1,253,108

Grants Awarded

Over the last fiscal year, National Tay Sachs & Allied Diseases Association Inc has awarded $71,954 in support to 2 organizations.

Grant RecipientAmount

MASS GENERAL HOSPITAL - IHP

Org PageRecipient Profile

Somerville, MA

PURPOSE: LYSOSOMAL STORAGE DISEASE RESEARCH

$55,917

UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL

Org PageRecipient Profile

Shrewsbury, MA

PURPOSE: LYSOSOMAL STORAGE DISEASE RESEARCH

$16,037
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 1 grants that National Tay Sachs & Allied Diseases Association Inc has recieved totaling $5,000.

Awarding OrganizationAmount
Trois Coeurs Foundation

Wilmington, DE

PURPOSE: GENERAL & UNRESTRICTED

$5,000
View Grant Recipient Profile

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