UNITED LEUKODYSTROPHY FOUNDATION INC

EIN: 351557361 501(c)(3)

CHICAGO, IL

Total Revenue
$518,325
Total Expenses
$482,598
Total Assets
$1,745,232
Net Assets
$1,744,832
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1982
Legal Domicile
IN
Principal Officer
RON CHAPLEAU
Phone
8157483211
Tax Period
2025-01-01 to 2025-12-31

UNITED LEUKODYSTROPHY FOUNDATION INC, founded in 1982, is a small nonprofit that reported $518K in total revenue in fiscal year 2025. Revenue decreased 13% compared to the prior year. Expenses of $483K left a modest 7% surplus.

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.

Program Service Accomplishments

Program 1
Expenses: $381,430

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...

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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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $465,339
Program Service Revenue $0
Investment Income $52,986
Other Revenue $0
TOTAL REVENUE $518,325

Expense Breakdown

Grants Paid $33,000
Salaries & Benefits $172,109
Fundraising Expenses $24,749
Program Expenses $381,430
Other Expenses $277,489
TOTAL EXPENSES $482,598

Year-over-Year Comparison

2025 2024 Change
Revenue $518,325 $596,320 -0.1%
Expenses $482,598 $553,048 -0.1%
Net Income $35,727 $43,272 -0.2%
Key Indicators
✓ Grants to Organizations ✗ Grants to Individuals ✗ Lobbying ✗ Political Activity ✗ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required
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Governance

Voting Members
13
Independent Members
13
Employees
2
Volunteers
N/A

Governance Policies

✗ Conflict of Interest Policy
✗ Whistleblower Policy
✗ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School
✗ Operated a Hospital
✗ Provided First Class Travel
✗ Reported Conflict of Interest
✗ Reported Asset Diversion
✗ Excess Benefit Transaction
✗ Made Political Expenditures
✗ Engaged in Lobbying
✗ Operated Donor Advised Fund
✗ Maintained Art Collections
✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
4
$0
Total Directors
14
$96,595
Key Employees
1
$96,595
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Diane Fennimore Executive Director 040.00
Director Key Emp
$96,595 $0 $96,595
Donna Skwirut Treasurer 002.00
Officer Director
$0 $0 $0
Shannon Reed Secretary 002.00
Officer Director
$0 $0 $0
Ron Chapleau President 015.00
Officer Director
$0 $0 $0
Mousumi Bose Director 002.00
Director
$0 $0 $0
Amber Freed Director 002.00
Director
$0 $0 $0
Gregory Huffer Director 002.00
Director
$0 $0 $0
Dr Joseph Hacia Director 002.00
Director
$0 $0 $0
Dr Stephanie Keller Vice President 002.00
Officer Director
$0 $0 $0
Marcie Flores Director 002.00
Director
$0 $0 $0
John Kaprich Director 002.00
Director
$0 $0 $0
Margaret Mcintyre Director 002.00
Director
$0 $0 $0
Marilyn Schmiedel Director 002.00
Director
$0 $0 $0
Michele Herndon Director 002.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $518,325 $482,598 $1,745,232 $35,727
2024 $596,320 $553,048 $1,576,623 $43,272
2023 $730,096 $656,324 $1,525,484 $73,772
2022 $498,897 $557,781 $1,456,386 $-58,884
2021 $662,662 $437,190 $1,641,493 $225,472
2020 $703,990 $321,678 $1,379,409 $382,312
2019 $434,192 $434,313 $939,092 $-121
2018 $418,227 $365,242 $845,512 $52,985
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