Chelseas Hope Lafora Children Research Fund

Nonprofit profile at a glance

EIN
271008382
IRS 990 coverage
2021–2025
Forms available
Form 990 2025, Form 990-EZ 2017, Form 990-N 2020
Location
Lexington, KY, USA
Phone
8599130575
Rating
91
Verdict
STRONG
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$453,936
Expenses
$495,276
Assets
$318,674
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

9 people listed

Executive titles in this filing

  • Katherine Donohue (Finance Director & Executive Director (Top Management))
  • Jenifer Merriam (President)
  • KATRINA COTTON (VICE PRESIDENT)

Highest reported compensation

  • Katherine Donohue (Finance Director & Executive Director (Top Management)): $53,500 total reported compensation
  • CHRISTINE KELLY (COMMUNICATIONS DIRECTOR): $50,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 100% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 66% of its reported program spending out as grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 96
  • Transparency & Controls: 94
  • Accountability: 91
  • Sustainability: 29
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 94.6%; rating input score 95
  • Fundraising efficiency: $80.82 raised per $1 spent on fundraising; rating input score 81; 81st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 81st percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 7 of 9 controls in place; rating input score 78
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -9.1%; rating input score 20; 20th percentile among comparable filings
  • Total-asset coverage ratio: 0.64; rating input score 30; 30th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
  • Officer compensation ratio: 20.9%; rating input score 18; 18th percentile among comparable filings

Growth

  • Program expense growth: 38.8% per year; rating input score 100; 93rd percentile among comparable filings
  • Revenue growth: 14% per year; rating input score 100; 78th percentile among comparable filings
  • Asset growth: 17.3% per year; rating input score 100; 79th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 94.6% of spending went to programs
  • Governance: 7 of 7 board members independent · 7 of 9 filing controls reported
  • Programs: 4 filed program accomplishments · $468K in reported program spending
  • Leadership: top reported pay $54K · 9 people listed
  • Consistency: 41 of 41 current checks pass
  • Schedules: 4 filed schedules · includes major donors and grants
  • Filing history: 5 filing years from 2021 to 2025
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Sustainability: Operating margin scored 20/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 30/100.
  • High — Sustainability: Officer compensation ratio scored 18/100.