Cure Tay-Sachs Foundation
The Cure Tay-Sachs Foundation has been created to fund the research initiatives that show promise to treat and ultimately cure tay-sachs disease (TSD). TSD is hereditary disease passed on when two carrier parents both pass the tay-sachs gene to their child. Tay-sachs has three forms - the classic or infantile form, the juvenile onset form and the late on-set form known as lots. Children infected with the infantile or juvenile form currently have a 100% mortaility rate - no child has ever survived this disease. We aim to change that.
Cure Tay-Sachs Foundation at a glance
In short: Cure Tay-Sachs Foundation gave $200K across 2 grants in 2024 (avg $100K), mostly in Massachusetts. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $200,000
- +66.8% vs 2023
- Grants made (2024)
- 2
- +0.0% vs 2023
- Average grant
- $100,000
- +66.8% vs 2023
- Median grant
- $100,000
- Total assets
- $1,941,305
- -8.5% vs 2023
- Primary geography
- Massachusetts (100% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
Who Cure Tay-Sachs Foundation funds
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
The largest 2024 recipient was University of Massachusetts ($150K). Together the top 2 received $200K.
Grant Size Distribution
5 grants across all recorded years
The most common grant size was under $50K: 2 grants of 5 (40%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 2 itemized grants.
States
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $24K (2020) to $200K (2024). In 2024 it made 2 grants totaling $200K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Massachusetts Worcester, MA | GRANT | $150,000 |
| NTSAD Boston, MA | GRANT | $50,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $1,941,305 | $141,059 | $251,226 | $200,000 | 2 | $83,196 |
| 2023 | $2,122,357 | $107,582 | $189,307 | $119,875 | 2 | $39,613 |
| 2022 | $2,287,110 | $448,202 | $238,193 | $146,398 | Total only | $27,368 |
| 2021 | $2,077,101 | $192,718 | $225,746 | $146,398 | Total only | $89,263 |
| 2020 | $2,110,129 | $289,919 | $154,274 | $24,000 | 1 | $15,958 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Cure Tay-Sachs Foundation
Based on IRS filings
Cure Tay-Sachs Foundation is a public charity focused on Medical Research, based in Phoenix, AZ. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $1.9M in total assets. In 2024, it awarded 2 grants totaling $200K. Net investment income was $83K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Cure Tay-Sachs Foundation is led by Rick Karl, President on every filing since 2020; 1 of 13 officers listed in 2024 is compensated.
Officers on the 2024 filing
Rick Karl
President
On filings since 2020
20 hrs/week
$48K (2020) → $48K (2024)
Brian Plick
Director
On filings since 2020
2 hrs/week
No compensation reported
Brianne Anderson
Director
On filings since 2020
2 hrs/week
No compensation reported
Cheryl Babo
Director
On filings since 2020
2 hrs/week
No compensation reported
Deepa Kodali
Director
On filings since 2020
2 hrs/week
No compensation reported
Holly McDonald
Director
On filings since 2020
2 hrs/week
No compensation reported
Laurie Ten Berg
Director
On filings since 2020
2 hrs/week
No compensation reported
Matt Lunchick
Director
On filings since 2020
2 hrs/week
No compensation reported
Nicki Luce
Director
On filings since 2020
2 hrs/week
No compensation reported
Robbie Sandoval
Director
On filings since 2020
2 hrs/week
No compensation reported
Royce Stinger
Director
On filings since 2020
2 hrs/week
No compensation reported
Terry Karl Esq.
Director
On filings since 2020
2 hrs/week
No compensation reported
Bruce Steiger
Treasurer
On filings since 2020
8 hrs/week
No compensation reported
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $48K, to Rick Karl (President).
Frequently asked questions about Cure Tay-Sachs Foundation
How much does Cure Tay-Sachs Foundation give each year?
Cure Tay-Sachs Foundation gave $200K across 2 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $120K across 2 grants.
How large is Cure Tay-Sachs Foundation?
Cure Tay-Sachs Foundation reported $1.9M in total assets on its 2024 IRS Form 990. Its revenue that year was $141K.
What is Cure Tay-Sachs Foundation?
Cure Tay-Sachs Foundation is a public charity focused on Medical Research, based in Phoenix, AZ. It holds $1.9M in total assets as of 2024.
Where does Cure Tay-Sachs Foundation operate?
Cure Tay-Sachs Foundation has awarded grants in Massachusetts.
What is Cure Tay-Sachs Foundation's EIN?
Cure Tay-Sachs Foundation's EIN (Employer Identification Number) is 26-0256621. IRS Form 990 filing data is available on this page for 2020–2024.
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
- Updated Form 990 for fiscal year 2020 (received by the IRS November 10, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 15, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 8, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS August 13, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Cure Tay-Sachs Foundation funds
Medical Research Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Cure Tay-Sachs Foundation's focus areas in our free grants database
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