Nonprofit · EIN 27-1008382
CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND
Tax-exempt · LEXINGTON, KY 40504
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $453,936 | $495,276 | -$41,340 | $318,674 | $0 | $318,674 |
| December 31, 2024 | 990 | $257,587 | $679,497 | -$421,910 | $360,014 | $0 | $360,014 |
| December 31, 2023 | 990 | $279,702 | $197,594 | $82,108 | $781,924 | $0 | $781,924 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $452,442
- Program service revenue
- $0
- Investment income
- $1,494
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $310,000
- Compensation of officers, directors and key employees
- $82,228
- Other salaries and wages
- $12,560
- Salaries, compensation and benefits (total)
- $124,283
- Professional fundraising fees
- $0
- Travel
- $279
- Program services (functional)
- $468,303
- Management and general (functional)
- $21,375
- Fundraising (functional)
- $5,598
Balance sheet and other
- Total assets, start of year
- $360,014
- Total assets, end of year
- $318,674
- Total liabilities, end of year
- $0
- Net assets, end of year
- $318,674
- Net assets without donor restrictions
- $174,722
- Net assets with donor restrictions
- $143,952
- Gross receipts
- $453,936
- Employees
- 0
- Volunteers
- 20
- Year formed
- 2009
- State of legal domicile
- CA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Katherine Donohue | Finance Director & Executive Director (Top Management) Key employee | 35 | $53,500 |
| CHRISTINE KELLY | COMMUNICATIONS DIRECTOR Key employee | 35 | $50,000 |
| Jenifer Merriam | President Trustee or director | 10 | $0 |
| Sheila Barter | Treasurer Trustee or director | 2 | $0 |
| Meredith Williams | Secretary Trustee or director | 2 | $0 |
| Nadia Ismail | At-Large Member, Board of Directors Trustee or director | 2 | $0 |
| Niki Markou | At-Large Member, Board of Directors Trustee or director | 2 | $0 |
| KATRINA COTTON | VICE PRESIDENT Trustee or director | 2 | $0 |
| RODERICK HOWARD | AT-LARGE MEMBER BOARD OF DIRECTORS Trustee or director | 1 | $0 |
990 for the year ended December 31, 2024: 8 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Lena Ismail | Executive Director (Top Management) Officer | 35 | $66,796 |
| Katherine Donohue | Finance Director & Executive Director (Top Management) Officer | 35 | $53,004 |
| Frank Harris | President Trustee or director | 5 | $0 |
| Jenifer Merriam | Vice President Trustee or director | 5 | $0 |
| Sheila Barter | Treasurer Trustee or director | 5 | $0 |
| Meredith Williams | Secretary Trustee or director | 5 | $0 |
| Nadia Ismail | At-Large Member, Board of Directors Trustee or director | 5 | $0 |
| Niki Markou | At-Large Member, Board of Directors Trustee or director | 15 | $0 |
990 for the year ended December 31, 2023: 7 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| NIKI MARKOU | DIRECTOR OF FAMILY SUPPORT Trustee or director | 5 | $0 |
| NADIA ISMAIL | PATIENT COMMUNITY REPRESENTAT Trustee or director | 5 | $0 |
| MEREDITH WILLIAMS | SECRETARY Officer | 5 | $0 |
| FRANK HARRIS | PRESIDENT Officer | 5 | $0 |
| JENNIFER MERRIAM | VICE PRESIDENT Officer | 5 | $0 |
| SHIELA BARTER | TREASURER Officer | 5 | $0 |
| LENA ISMAIL | EXECUTIVE DIRECTOR Key employee | 40 | $0 |
Address and contacts
- Address (IRS master file)
- 976 MAYWICK DR, LEXINGTON, KY 40504-3122
- In care of
- % LINDA S GERBER
- Mailing address (990-N for 2020)
- PO Box 348626, Sacramento CA 95834
- Principal officer (990 for 2025)
- Katherine Donohue, 976 Maywick Dr, Lexington, KY 40504
- Principal officer (990-N for 2020)
- Francis Harris, PO Box 348626, Sacramento CA 95834
- Signed the 990
- Katherine Donohue, Executive Director
- Phone
- (859) 913-0575
- Website
- www.chelseashope.org
Mission
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.
Program accomplishments
- Funding a Clinical Safety Study: Our organization provided grants in total of $310,000 to the University of Texas Southwestern Medical Center to fund their FDA-approved safety study for ION283, a drug with the potential to treat patients with Lafora Disease. Our efforts ensured that enough funds were available to enroll all 10 patients in the study.Expenses $310,000 · grants $310,000
- Family Support Services: Our staff and interns receive compensation in order to provide families with a variety of support resources. In 2025, we hosted 16 committee meetings to plan outreach, financing, and family support projects, sent 14 newsletter communications, produced 2 publications and 5 research simplifications, surveyed priorities of over 60 families through our caregiver registry, connected more than 30 families through regular family support meetings, and hosted 15 virtual workshops to identify biomarkers and clinical best practices for treating Lafora. Our organization also maintains software and website subscriptions to disseminate these resources.Expenses $110,581
- Annual Lafora Science Symposium: Our organization hosts an annual science symposium that brings together families, scientists, clinicians, patient advocates, and industry representatives to accelerate the development of therapies for Lafora disease. We hosted 101 in-person and 193 virtual participants for our 3-day event in Valencia.Expenses $47,423
- LAFORA AWARENESS EVENT FOR RARE DISEASE DAYExpenses $299
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 27-1008382
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2010
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H12)
- Assets (IRS master file)
- $318,674
- Income (IRS master file)
- $453,936
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $453,936 | $495,276 | $318,674 | IRS |
| 990 | December 2024 | $257,587 | $679,497 | $360,014 | IRS |
| 990 | December 2023 | $279,702 | $197,594 | $781,924 | XML |
| 990 | December 2022 | $652,148 | $265,056 | $658,282 | IRS |
| 990 | December 2021 | $260,006 | $35,916 | $272,210 | IRS |
| 990-N for 2020 Officer: Francis Harris | December 31, 2020 | ≤ $50,000 receipts | – | – | e-Postcard |
| 990-EZ | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 27-1008382).
Questions about CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND
- What is the EIN of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND?
- The employer identification number (EIN) of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND is 27-1008382.
- Is CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2010.
- Are donations to CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND?
- The 990 for the year ended December 31, 2025 names Katherine Donohue.
- Who are the officers and directors of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND?
- The 990 for the year ended December 31, 2025 lists 9 people; 2 received compensation from the organization, the highest $53,500 (Katherine Donohue, Finance Director & Executive Director (Top Management)).
- How much revenue does CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $453,936, expenses of $495,276 and total assets of $318,674 at year end.
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