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.
United Leukodystrophy Foundation Inc at a glance
In short: United Leukodystrophy Foundation Inc gave $33K across 1 grant in 2025 (avg $33K), mostly in Massachusetts. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $33,000
- -17.5% vs 2024
- Grants made (2025)
- 1
- -50.0% vs 2024
- Average grant
- $33,000
- +65.0% vs 2024
- Median grant
- $33,000
- Total assets
- $1,745,232
- +10.7% vs 2024
- Primary geography
- Massachusetts (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to United Leukodystrophy Foundation Inc
Open Grants
3 open opportunities from United Leukodystrophy Foundation Inc
2026 ULF Family Conference Scholarship
United Leukodystrophy Foundation Inc
Amount
Varies
Deadline
Deadline not published
Dr. Paul A. Watkins Excellence in Research Award
United Leukodystrophy Foundation Inc
Amount
Varies
Deadline
Deadline not published
ULF Research Grant Program
United Leukodystrophy Foundation Inc
Amount
Varies
Deadline
Deadline not published
Who United Leukodystrophy Foundation Inc funds
How this funder distributes its grants
Top Recipients
Top recipient in 2025
The largest 2025 recipient was UMass Chan Medical School ($33K).
Grant Size Distribution
5 grants across all recorded years
The most common grant size was under $50K: 5 grants of 5 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2025 grant dollars on its one itemized grant.
Cities
How United Leukodystrophy Foundation Inc gives
- Giving grew 65% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $20K (2022) to $68K (2021). In 2025 it made 1 grant totaling $33K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| UMass Chan Medical School Worcester, MA | Research | $33,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $1,745,232 | $518,325 | $482,598 | $33,000 | 1 | $52,986 |
| 2024 | $1,576,623 | $596,320 | $553,048 | $40,000 | 2 | $65,818 |
| 2023 | $1,525,484 | $730,096 | $656,324 | $20,000 | 1 | $155,178 |
| 2022 | $1,456,386 | $498,897 | $557,781 | $20,000 | 1 | $-74,035 |
| 2021 | $1,641,493 | $662,662 | $437,190 | $68,000 | Total only | $90,271 |
| 2020 | $1,379,409 | $703,990 | $321,678 | $49,500 | 2 | $33,925 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About United Leukodystrophy Foundation Inc
Based on IRS filings
United Leukodystrophy Foundation Inc is a public charity, based in Chicago, IL. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $1.7M in total assets. In 2025, it awarded 1 grant totaling $33K. Net investment income was $53K.
Leadership & Key People
Officers and directors from IRS filings
United Leukodystrophy Foundation Inc is led by Diane Fennimore, Executive Director on every filing since 2023; 1 of 14 officers listed in 2025 is compensated.
Officers on the 2025 filing
Diane Fennimore
Executive Director
On filings since 2023
40 hrs/week
$28K (2023) → $97K (2025)
Ron Chapleau
President
Vice President → President, 2023
On filings since 2020
15 hrs/week
No compensation reported
Joseph Hacia
Director
On filings since 2020
2 hrs/week
No compensation reported
John Kaprich
Director
On filings since 2022
2 hrs/week
No compensation reported
Marcie Flores
Director
On filings since 2022
2 hrs/week
No compensation reported
Margaret Mcintyre
Director
On filings since 2022
2 hrs/week
No compensation reported
Marilyn Schmiedel
Director
On filings since 2022
2 hrs/week
No compensation reported
Amber Freed
Director
On filings since 2023
2 hrs/week
No compensation reported
Gregory Huffer
Director
On filings since 2023
2 hrs/week
No compensation reported
Mousumi Bose
Director
On filings since 2023
2 hrs/week
No compensation reported
Michele Herndon
Director
On filings since 2024
2 hrs/week
No compensation reported
Donna Skwirut
Treasurer
Director → Treasurer, 2022
On filings since 2020
2 hrs/week
No compensation reported
Stephanie Keller
Vice President
Director → Vice President, 2023
On filings since 2020
2 hrs/week
No compensation reported
Shannon Reed
Secretary
Director → Secretary, 2023
On filings since 2022
2 hrs/week
No compensation reported
Former officers (12)
- Former: John Wolf (2020–2022) — Director
- Former: Joyce Changle (2020–2022) — Director
- Former: Kristie DeMarco (2020–2022) — Director
- Former: Robert Rauner (2020–2022) — President
- Former: Sa Von Rudenick (2020–2022) — Secretary
- Former: Christopher Rice (2021–2022) — Executive Director
- Former: Alan Fingeroot (2020–2021) — Treasurer
- Former: Margaret Halter (2020–2021) — Secretary
- Former: Anne Brendel (2021) — Director
- Former: Claudette Collier (2020) — Director
- Former: Colleen Kintner (2020) — Director
- Former: Yolanda Chacon-Serna (2020) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $97K, to Diane Fennimore (Executive Director).
Frequently asked questions about United Leukodystrophy Foundation Inc
How much does United Leukodystrophy Foundation Inc give each year?
United Leukodystrophy Foundation Inc gave $33K across 1 grant in 2025, according to its 2025 IRS Form 990. In 2024 it gave $40K across 2 grants.
How large is United Leukodystrophy Foundation Inc?
United Leukodystrophy Foundation Inc reported $1.7M in total assets on its 2025 IRS Form 990. Its revenue that year was $518K.
Where does United Leukodystrophy Foundation Inc operate?
United Leukodystrophy Foundation Inc has awarded grants in California, Massachusetts, Maryland, Pennsylvania.
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 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(3)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2021 (received by the IRS May 12, 2022)
- Added Form 990 for fiscal year 2025 (received by the IRS May 4, 2026)
- IRS filings on file for fiscal years 2020–2024
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