United Leukodystrophy Foundation Inc
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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$1.6M
+3.4% YoY
Annual Giving
$40K
+100.0% YoY
Grant Count
2
+100.0% YoY
Avg Grant Size
$20K
+0.0% YoY
About United Leukodystrophy Foundation Inc
Based on IRS filings
United Leukodystrophy Foundation Inc is a nonprofit organization, based in DEKALB, IL. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $1.6M in total assets. In 2024, it awarded 2 grants totaling $40K. Net investment income was $66K.
Ready to take the next step with United Leukodystrophy Foundation Inc?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $1,576,623 | $1,525,484 | $1,456,386 |
| Revenue | $596,320 | $730,096 | $498,897 |
| Expenses | $553,048 | $656,324 | $557,781 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $65,818 | $155,178 | $-74,035 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
Grant Size Distribution
6 grants across all recorded years
Open Grants
3 open opportunities from United Leukodystrophy Foundation Inc
2026 ULF Family Conference Scholarship
UNITED LEUKODYSTROPHY FOUNDATION INC
Amount
Varies
Deadline
Rolling / Open
Dr. Paul A. Watkins Excellence in Research Award
UNITED LEUKODYSTROPHY FOUNDATION INC
Amount
Varies
Deadline
Rolling / Open
ULF Research Grant Program
UNITED LEUKODYSTROPHY FOUNDATION INC
Amount
Varies
Deadline
Rolling / Open
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Diane Fennimore | Executive Director | 40 | $94,381 |
| Donna Skwirut | Treasurer | 2 | — |
| Shannon Reed | Secretary | 2 | — |
| Ron Chapleau | President | 15 | — |
| Mousumi Bose | Director | 2 | — |
| Amber Freed | Director | 2 | — |
| Gregory Huffer | Director | 2 | — |
| Dr Joseph Hacia | Director | 2 | — |
| Dr Stephanie Keller | Vice President | 2 | — |
| Marcie Flores | Director | 2 | — |
| John Kaprich | Director | 2 | — |
| Margaret Mcintyre | Director | 2 | — |
| Marilyn Schmiedel | Director | 2 | — |
| Michele Herndon | Director | 2 | — |
Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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