United Leukodystrophy Foundation Inc

Nonprofit profile at a glance

EIN
351557361
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Chicago, IL, USA
Phone
8157483211
Rating
86
Verdict
STRONG
Rating confidence
Moderate

Official website

Reported finances

Revenue
$518,325
Expenses
$482,598
Assets
$1,745,232
Liabilities
$400

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

Leadership & pay

14 people listed

Executive titles in this filing

  • Diane Fennimore (Executive Director)
  • Ron Chapleau (President)
  • Dr Stephanie Keller (Vice President)

Highest reported compensation

  • Diane Fennimore (Executive Director): $96,595 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 United Leukodystrophy Foundation is dedicated to helping children and adults who have Leukodystrophy and assisting family members, professionals and support services that serve them. The ULF is committed to the identification, treatment and cure of all leukodystrophies through programs of education, advocacy, research and service.

What it reported doing in 2025

The United Leukodystrophy Foundation ULF is a nonprofit 501c3 organization founded in 1982 that serves patients, families and medical professionals in the U.S. and internationally. The ULFs mission is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures. Three of the ULFs main accomplishments include 1 supporting leukodystrophy research to discover improved therapies and ultimately a cure 2 presenting an annual educational scientific symposium and family conference and 3 providing education and medical referrals to patients and families affected by the disease.

Operating model

Revenue model
Donor-supported. 93% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 91% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 76
  • Transparency & Controls: 94
  • Accountability: 100
  • Sustainability: 57
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 77.9%; rating input score 78
  • Program expense ratio: 79%; rating input score 79
  • Fundraising efficiency: $18.8 raised per $1 spent on fundraising; rating input score 54; 54th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 78th 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: 8 of 8 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 6.9%; rating input score 49; 49th percentile among comparable filings
  • Total-asset coverage ratio: 3.62; rating input score 79; 79th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 75; 75th percentile among comparable filings
  • Officer compensation ratio: 20%; rating input score 16; 16th percentile among comparable filings

Growth

  • Program expense growth: 4.5% per year; rating input score 100; 34th percentile among comparable filings
  • Revenue growth: 6.4% per year; rating input score 100; 45th percentile among comparable filings
  • Asset growth: 5.7% per year; rating input score 100; 38th percentile among comparable filings

Details

  • Where the money goes: 77.9% of revenue deployed · 79% of spending went to programs
  • Governance: 13 of 13 board members independent · 8 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $381K in reported program spending
  • Leadership: top reported pay $97K · 14 people listed
  • Consistency: 28 of 28 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 14 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 2 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.

  • Review — Financial Efficiency: Fundraising efficiency scored 54/100.
  • Moderate — Sustainability: Operating margin scored 49/100.
  • High — Sustainability: Officer compensation ratio scored 16/100.