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.
Key facts about United Leukodystrophy Foundation Inc
In short: United Leukodystrophy Foundation Inc gave $33K across 1 grant in 2025 (avg $33K), mostly in Massachusetts. Source: 2025 IRS Form 990.
- EIN
- 35-1557361
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $33,000
- Grants made (2025)
- 1
- Average grant
- $33,000
- Median grant
- $33,000
- Total assets
- $1,745,232
- Primary geography
- Massachusetts (100% of itemized 2025 grant dollars)
Data from IRS Form 990, 2025; updated September 2026.
Quick answers 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 United Leukodystrophy Foundation Inc gives
- Giving grew 65% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Next steps with United Leukodystrophy Foundation Inc
- How to evaluate United Leukodystrophy Foundation Inc as a funder
Our grant prospecting guide: read the 990-PF, check fit, and decide whether to apply.
- Draft an LOI to United Leukodystrophy Foundation Inc with AI
AI grant writing that drafts from your organization’s own materials, in your voice.
- Track this opportunity in a free grant tracker
A free Google Sheets or Excel template for deadlines, award terms, and reports due.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$1.7M
+10.7% YoY
Annual Giving
$33K
-17.5% YoY
Grant Count
1
-50.0% YoY
Avg Grant Size
$33K
+65.0% YoY
About United Leukodystrophy Foundation Inc
Based on IRS filings
United Leukodystrophy Foundation Inc is a nonprofit organization, 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.
Ready to take the next step with United Leukodystrophy Foundation Inc?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 1 itemized 2025 grant dollars.
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $1,745,232 | $1,576,623 | $1,525,484 |
| Revenue | $518,325 | $596,320 | $730,096 |
| Expenses | $482,598 | $553,048 | $656,324 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $52,986 | $65,818 | $155,178 |
| Distributable Amount | — | — | — |
Data update history
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
Giving Over Time
Total grant dollars and number of grants per year
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 1 recipients in 2025
Grant Size Distribution
5 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
| Recipient | Purpose | Amount |
|---|---|---|
| UMass Chan Medical School Worcester, MA | Research | $33,000 |
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
Frequently Asked Questions
How large is United Leukodystrophy Foundation Inc?
As of 2025, United Leukodystrophy Foundation Inc holds $1.7M in total assets with $518K in annual revenue. It awarded 1 grant totaling $33K in 2025.
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.
Explore Open Grants
Browse active grant opportunities in United Leukodystrophy Foundation Inc's focus areas in our free grants database
Similar Funders
Funders that support many of the same organizations
Morris Weinman Memorial Foundation Inc
Owings Mills, MD
Assets
—
Grants
42
Total Given
$70K
Paul B Greetin and Beryl S Greetin
Downingtown, PA
Assets
—
Grants
37
Total Given
$403K
The Arthur F and Isadora Dellheim
Baltimore, MD
Assets
$648K
Grants
29
Total Given
$59K
The Sinsky-Kresser-Racusin Memorial Foundation Inc
Owings Mills, MD
Assets
—
Grants
32
Total Given
$130K
The Parent Project for Muscular
Washington, DC
Assets
$12.6M
Grants
29
Total Given
$2.5M
Koch Family Foundation Inc
Annapolis, MD
Assets
$3.0M
Grants
60
Total Given
$150K
Philip a Zaffere Foundation Inc
Towson, MD
Assets
$18.5M
Grants
24
Total Given
$1.5M
Herman & Walter Samuelson
Towson, MD
Assets
—
Grants
31
Total Given
$2.3M
The Larry and Nancy Pantirer Family
Short Hills, NJ
Assets
$83K
Grants
20
Total Given
$112K
Drexel University
Philadelphia, PA
Assets
$2.9B
Grants
120
Total Given
$16.9M
David W Buck Family Foundation Inc
Sparks, MD
Assets
—
Grants
66
Total Given
$120K
Thomas W Pangborn
Pittsburgh, PA
Assets
$25.2M
Grants
38
Total Given
$1.4M
More Funders in Illinois
Data last updated September 2026. Sourced from IRS Form 990 filings.