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.
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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
Among its reported 2024 grants, the largest include Kennedy Krieger Institute ($20,000), Children's National Hospital ($20,000).
| Recipient | Purpose | Amount |
|---|---|---|
| Kennedy Krieger Institute Baltimore, MD | Research | $20,000 |
| Children's National Hospital Silver Spring, MD | — | $20,000 |
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 | — |
Frequently Asked Questions
How large is United Leukodystrophy Foundation Inc?
As of 2024, United Leukodystrophy Foundation Inc holds $1.6M in total assets with $596K in annual revenue. It awarded 2 grants totaling $40K in 2024.
Where does United Leukodystrophy Foundation Inc operate?
United Leukodystrophy Foundation Inc has awarded grants in California, Maryland, Pennsylvania.
What size grants does United Leukodystrophy Foundation Inc award?
In 2024, United Leukodystrophy Foundation Inc awarded 2 grants totaling $40K — an average of about $20K per grant, based on its IRS Form 990 filings.
What is United Leukodystrophy Foundation Inc's EIN?
United Leukodystrophy Foundation Inc's EIN (Employer Identification Number) is 35-1557361. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
Browse active grant opportunities in United Leukodystrophy Foundation Inc's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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