National Tay-Sachs & Allied Diseases Ass
Ntsad leads the worldwide fight to treat and cure tay-sachs, canavan, gm1, and sandhoff diseases by driving research, forging collaboratiion, and fostering community, supporting families is the center of everything we do.
National Tay-Sachs & Allied Diseases Ass at a glance
- Total assets
- $2,769,718
- -2.9% vs 2024
- Revenue (2025)
- $1,397,598
- +1.5% vs 2024
- Net investment income (2025)
- $65,747
- -10.6% vs 2024
- Expenses (2025)
- $1,448,700
- +7.8% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to National Tay-Sachs & Allied Diseases Ass
- Next open deadline
- January 3, 2027 (Gottlieb Sibling Scholarships (Jeffrey Alan and Stanley N. Gottlieb Memorial Scholarship Funds))
Open Grants
2 open opportunities from National Tay-Sachs & Allied Diseases Ass
Gottlieb Sibling Scholarships (Jeffrey Alan and Stanley N. Gottlieb Memorial Scholarship Funds)
National Tay-Sachs & Allied Diseases Ass
Amount
Varies
Deadline
Expected ~January
Based on past cycles
NTSAD Research Initiative Program
National Tay-Sachs & Allied Diseases Ass
Amount
$2,000 - $75,000 (one year); $20,000 - $140,000 (two years)
Deadline
Rolling (quarterly review)
Who National Tay-Sachs & Allied Diseases Ass funds
How this funder distributes its grants
Grant Size Distribution
9 grants across all recorded years
The most common grant size was under $50K: 5 grants of 9 (56%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
How National Tay-Sachs & Allied Diseases Ass gives
- Giving grew 118% from 2020 to 2023. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2023, annual grant giving ranged from $72K (2022) to $311K (2023). In 2023 it made 3 grants totaling $311K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Umass Chan Medical Center Worcester, MA | Lysomal Storage Disease Research | $142,875 |
| Auburn University AL Auburn, AL | Lysomal Storage Disease Research | $112,000 |
| MGH Inst of Health Professions Charlestown, MA | Lysomal Storage Disease Research | $55,917 |
Ready to take the next step with National Tay-Sachs & Allied Diseases Ass?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $2,769,718 | $1,397,598 | $1,448,700 | — | — | $65,747 |
| 2024 | $2,853,352 | $1,376,815 | $1,344,428 | — | — | $73,557 |
| 2023 | $2,868,442 | $1,177,492 | $1,507,806 | $310,792 | 3 | $37,785 |
| 2022 | $3,116,145 | $1,253,108 | $770,790 | $71,954 | 2 | $1,411 |
| 2021 | $2,686,792 | $1,320,048 | $748,295 | $129,500 | 4 | $1,264 |
| 2020 | $2,169,529 | $1,163,793 | $676,801 | $142,500 | 6 | $17,354 |
| 2019 | $1,597,631 | $1,100,075 | $907,900 | $137,232 | 6 | $21,075 |
About National Tay-Sachs & Allied Diseases Ass
Based on IRS filings
National Tay-Sachs & Allied Diseases Ass is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Brighton, MA. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $2.8M in total assets. Net investment income was $66K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
National Tay-Sachs & Allied Diseases Ass is led by Kathleen Flynn, CEO on every filing since 2023; 1 of 20 officers listed in 2025 is compensated.
Officers on the 2025 filing
Kathleen Flynn
CEO
On filings since 2023
40 hrs/week
$159K (2023) → $170K (2025)
Sara Scaparotti
President
Director → Vice President & Director, 2023
Vice President & Director → President, 2025
On filings since 2022
2.5 hrs/week
No compensation reported
Gerry Cox
Director
On filings since 2019
2.5 hrs/week
No compensation reported
Oralea Marquardt
Director
President & Director → President, 2024
President → Director, 2025
On filings since 2019
2.5 hrs/week
No compensation reported
Staci Kallish
Director
Vice President → President, 2020
President → Director, 2023
On filings since 2019
2.5 hrs/week
No compensation reported
Carla Steckman
Director
On filings since 2020
2.5 hrs/week
No compensation reported
Jamie Ring
Director
On filings since 2020
2.5 hrs/week
No compensation reported
Abby Rogers
Director
On filings since 2022
2.5 hrs/week
No compensation reported
Bonnie Davis
Director
On filings since 2022
2.5 hrs/week
No compensation reported
Jonathan Katz
Director
On filings since 2022
2.5 hrs/week
No compensation reported
Lauren Celano
Director
On filings since 2022
2.5 hrs/week
No compensation reported
Martha Kleinman
Director
On filings since 2022
2.5 hrs/week
No compensation reported
Susan Roden
Director
On filings since 2022
2.5 hrs/week
No compensation reported
Dawn Laney
Director
On filings since 2023
2.5 hrs/week
No compensation reported
Deborah Sanders
Director
On filings since 2023
2.5 hrs/week
No compensation reported
Amber Franzen
Director
On filings since 2024
2.5 hrs/week
No compensation reported
Matthew Goldstein
Director
New on the 2025 filing
2.5 hrs/week
No compensation reported
Michael Richards
Treasurer
Treasurer → Treasurer & Director, 2023
Treasurer & Director → Treasurer, 2024
On filings since 2019
2.5 hrs/week
No compensation reported
Lisajane Romer
Secretary
Secretary → Secretary & Director, 2023
Secretary & Director → Secretary, 2024
On filings since 2022
2.5 hrs/week
No compensation reported
Jonathan Lawrence
Vice President
Director → Vice President, 2025
On filings since 2023
2.5 hrs/week
No compensation reported
Former officers (21)
- Former: Blyth Lord (2019–2024) — Director
- Former: Chris Chapman (2022–2024) — Director
- Former: Amy Speak (2019–2023) — Director
- Former: Ruth Feldman (2019–2023) — Director
- Former: Karen Grinzaid (2019–2022) — Director
- Former: Marion Yanovsky (2019–2022) — Director
- Former: Sophia Pesotchinksy (2019–2022) — Director
- Former: Susan Kahn (2019–2022) — Former Executive Director
- Former: Amy B. Katz (2019–2021) — Director
- Former: Brian Manning (2019–2021) — Director
- Former: Edna Kaplan (2019–2021) — Director
- Former: Kevin Romer (2019–2021) — Director
- Former: Merle Adelman (2019–2021) — Director
- Former: Meryl Kallish (2019–2021) — Director
- Former: Monica Gettleman (2019–2021) — Director
- Former: Risa Asnen (2019–2021) — Director
- Former: Shari Ungerleider (2019–2021) — Director
- Former: Stewart Altman (2019–2021) — Director
- Former: Jason Duncan (2020–2021) — Director
- Former: Alex Wright (2019) — Treasurer
- Former: William Johnson (2019) — Director
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $170K, to Kathleen Flynn (CEO).
Frequently asked questions about National Tay-Sachs & Allied Diseases Ass
How large is National Tay-Sachs & Allied Diseases Ass?
National Tay-Sachs & Allied Diseases Ass reported $2.8M in total assets on its 2025 IRS Form 990. Its revenue that year was $1.4M.
What is National Tay-Sachs & Allied Diseases Ass?
National Tay-Sachs & Allied Diseases Ass is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Brighton, MA. It holds $2.8M in total assets as of 2025.
Where does National Tay-Sachs & Allied Diseases Ass operate?
National Tay-Sachs & Allied Diseases Ass has awarded grants in Alabama, Massachusetts, Maryland, Missouri, Pennsylvania, Tennessee.
What is National Tay-Sachs & Allied Diseases Ass's EIN?
National Tay-Sachs & Allied Diseases Ass's EIN (Employer Identification Number) is 13-1912877. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS February 25, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS March 4, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 3, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 2, 2022)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 14, 2024)
- IRS filings on file for fiscal years 2020–2025
Explore Open Grants
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National Tay-Sachs & Allied Diseases Ass down — hundreds of funders to go?