Chelseas Hope Lafora Children Research Fund
The mission of Chelsea's Hope is to improve the lives of those affected by Lafora disease and to help accelerate the development of treatments. We do this by raising awareness, hosting educational events, and supporting research efforts for Lafora disease.
Chelseas Hope Lafora Children Research Fund at a glance
In short: Chelseas Hope Lafora Children Research Fund gave $310K across 1 grant in 2025 (avg $310K), mostly in Texas. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $310,000
- +106.7% vs 2024
- Grants made (2025)
- 1
- +0.0% vs 2024
- Average grant
- $310,000
- +106.7% vs 2024
- Median grant
- $310,000
- Total assets
- $318,674
- -11.5% vs 2024
- Primary geography
- Texas (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Chelseas Hope Lafora Children Research Fund
Open Grants
2 open opportunities from Chelseas Hope Lafora Children Research Fund
Chelsea's Hope Patient Assistance Grant
Chelseas Hope Lafora Children Research Fund
Amount
Varies
Deadline
Deadline not published
Probably Genetic Program - No-Cost Genetic Testing
Chelseas Hope Lafora Children Research Fund
Amount
Varies
Deadline
Deadline not published
Who Chelseas Hope Lafora Children Research Fund funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was The University of Texas Southwestern Medical Center ($310K).
Grant Size Distribution
3 grants across all recorded years
The most common grant size was under $50K: 1 grant of 3 (33%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
States
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2025, annual grant giving ranged from $10K (2021) to $310K (2025). In 2025 it made 1 grant totaling $310K.
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 |
|---|---|---|
| The University of Texas Southwestern Medical Center Dallas, TX | To support the lafora clinical trial: safety study for ion283 | $310,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $318,674 | $453,936 | $495,276 | $310,000 | 1 | $1,494 |
| 2024 | $360,014 | $257,587 | $679,497 | $150,000 | 1 | $9,259 |
| 2023 | $781,924 | $279,702 | $197,594 | — | — | $1,912 |
| 2022 | $658,282 | $652,148 | $265,056 | $130,644 | Total only | — |
| 2021 | $272,210 | $260,006 | $35,916 | $10,000 | 1 | — |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Chelseas Hope Lafora Children Research Fund
Based on IRS filings
Chelseas Hope Lafora Children Research Fund is a public charity focused on Medical Research, based in Lexington, KY. IRS filing data is available from 2021 through 2025. As of 2025, the organization holds $319K in total assets. In 2025, it awarded 1 grant totaling $310K. Net investment income was $1K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Chelseas Hope Lafora Children Research Fund is led by Katherine Donohue, Finance Director & Executive Director on every filing since 2024; 2 of 9 officers listed in 2025 are compensated.
Officers on the 2025 filing
Katherine Donohue
Finance Director & Executive Director
On filings since 2024
35 hrs/week
$53K (2024) → $54K (2025)
Jenifer Merriam
President
Vice President → President, 2025
On filings since 2021
10 hrs/week
No compensation reported
Christine Kelly
Communications Director
New on the 2025 filing
35 hrs/week
$50K (2025)
Niki Markou
At-Large Member & Board of Directors
Director → Director of Family Support, 2023
Director of Family Support → At-Large Member & Board of Directors, 2024
On filings since 2021
2 hrs/week
No compensation reported
Sheila Barter
Treasurer
On filings since 2021
2 hrs/week
No compensation reported
Meredith Williams
Secretary
On filings since 2023
2 hrs/week
No compensation reported
Nadia Ismail
At-Large Member & Board of Directors
Patient Community Representative → At-Large Member & Board of Directors, 2024
On filings since 2023
2 hrs/week
No compensation reported
Katrina Cotton
Vice President
New on the 2025 filing
2 hrs/week
No compensation reported
Roderick Howard
At-Large Member Board of Directors
New on the 2025 filing
1 hr/week
No compensation reported
Former officers (3)
- Former: Frank Harris (2021–2024) — President
- Former: Lena Ismail (2021–2024) — Executive Director
- Former: Shiela Barter (2023) — Treasurer
Data from IRS Form 990 filings, 2021–2025. "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 $54K, to Katherine Donohue (Finance Director & Executive Director (Top Management)). 2 officers or directors reported compensation on that filing.
Frequently asked questions about Chelseas Hope Lafora Children Research Fund
How much does Chelseas Hope Lafora Children Research Fund give each year?
Chelseas Hope Lafora Children Research Fund gave $310K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $150K across 1 grant.
How large is Chelseas Hope Lafora Children Research Fund?
Chelseas Hope Lafora Children Research Fund reported $319K in total assets on its 2025 IRS Form 990. Its revenue that year was $454K.
What is Chelseas Hope Lafora Children Research Fund?
Chelseas Hope Lafora Children Research Fund is a public charity focused on Medical Research, based in Lexington, KY. It holds $319K in total assets as of 2025.
Where does Chelseas Hope Lafora Children Research Fund operate?
Chelseas Hope Lafora Children Research Fund has awarded grants in Texas.
What is Chelseas Hope Lafora Children Research Fund's EIN?
Chelseas Hope Lafora Children Research Fund's EIN (Employer Identification Number) is 27-1008382. IRS Form 990 filing data is available on this page for 2021–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(5)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2024 (received by the IRS May 8, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS April 29, 2026)
- Updated Form 990 for fiscal year 2021 (received by the IRS January 12, 2023)
- Updated Form 990 for fiscal year 2022 (received by the IRS June 1, 2023)
- IRS filings on file for fiscal years 2021–2024
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Figures come from Chelseas Hope Lafora Children Research Fund's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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