Public Charity

CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND

CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND is a Public Charity headquartered in Lexington, KY. Financial data from the 2025 filing: $454K revenue, $495K expenses, $319K total assets. 12 publicly reported grants to this organization, totaling roughly $527K, appear in IRS filings.

EIN: 271008382 Lexington, KY Fund Raising & Fund Distribution NTEE: H12 Latest filing: 2025
Total Revenue$454K
Total Expenses$495K
Total Assets$319K
Grant Records12
Funding Total$527K
Filing Years2021–2025

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.

Where $100 goes at Chelseas Hope Lafora Children Research Fund

How Chelseas Hope Lafora Children Research Fund divides every $100 it spends, from its own Form 990 filings, averaged across 5 years.

$98 Programs the work itself
$2 Management running the organization
$0 Fundraising none reported

No fundraising costs are reported. That often means fundraising runs through a separate affiliated organization that files its own return.

Inside the $98 for programs

$65
Funding a Clinical Safety Study
66% of program spending · Reported in the filing: 10 patients
$23
Family Support Services
24% of program spending · Reported in the filing: 60 families; 30 families; 15 workshops
$10
Annual Lafora Science Symposium
10% of program spending · Reported in the filing: 193 participants

Plus 1 more program. Cost per person served and the full program breakdown are on the full profile.

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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

COMMUNICATIONS DIRECTOR Christine Kelly
President Jenifer Merriam
Finance Director & Executive Director (Top Management) Katherine Donohue
VICE PRESIDENT Katrina Cotton
Secretary Meredith Williams
At-Large Member, Board of Directors Nadia Ismail

Officer compensation and complete director data available with membership.

Top Grant Purposes

Health & Medicine
$406,000 3 grants
General Support
$121,418 9 grants

Financial Trends

Year Revenue Expenses Assets
2025 $454K $495K $319K
2024 $258K $679K $360K
2023 $280K $198K $782K
2022 $652K $265K $658K
2021 $260K $36K $272K

Between 2021 and 2025, reported annual revenue grew from $260K to $454K (+75%), with total assets most recently reported at $319K.

Interactive year-over-year charts and full filing details available with membership.

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