Civic Intelligence

The United Leukodystrophy Foundation Inc.

EIN 35-1557361 • 501(c)3 • Dekalb, IL

Pub. 78 Eligible

Profile

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.

224 N Second StDekalb, IL 60115

www.ulf.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

29th percentile

0.01x

Higher debt load relative to assets than 29% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2022

Liabilities / Revenue

33rd percentile

0.02x

Higher debt load relative to revenue than 33% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2022

Net Margin

20th percentile

-12%

Higher net margin than 20% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2022

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

14th percentile

-11%

Faster asset growth than 14% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2021 to 2022

Revenue Growth

12th percentile

-25%

Faster revenue growth than 12% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2021 to 2022

Balance Sheet
Liabilities / Assets29th percentile

Assets

Up

$1,576,623

Up $51,139 (+3.4%) from 2023

Liabilities

Down

$880

Down $13,490 (-94%) from 2023

Net Assets

Up

$1,575,743

Up $64,629 (+4.3%) from 2023

Operations
Liabilities / Revenue33rd percentileNet Margin20th percentile

Revenue

Down

$596,320

Down $133,776 (-18%) from 2023

Expenses

Down

$553,048

Down $103,276 (-16%) from 2023

Net Income

Down

$43,272

Down $30,500 (-41%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth14th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$2.0M$1.5M$1.0M$500K$0Assets 2012: $985,220Liabilities 2012: $148,517Net Assets 2012: $836,7032012Assets 2013: $1,036,524Liabilities 2013: $111,740Net Assets 2013: $924,7842013Assets 2014: $938,310Liabilities 2014: $9,609Net Assets 2014: $928,7012014Assets 2015: $896,807Liabilities 2015: $14,889Net Assets 2015: $881,9182015Assets 2016: $833,446Liabilities 2016: $10,002Net Assets 2016: $823,4442016Assets 2017: $883,575Liabilities 2017: $7,029Net Assets 2017: $876,5462017Assets 2018: $845,512Liabilities 2018: $3,298Net Assets 2018: $842,2142018Assets 2019: $939,092Liabilities 2019: $8,929Net Assets 2019: $930,1632019Assets 2020: $1,379,409Liabilities 2020: $4,055Net Assets 2020: $1,375,3542020Assets 2021: $1,641,493Liabilities 2021: $16,771Net Assets 2021: $1,624,7222021Assets 2022: $1,456,386Liabilities 2022: $9,345Net Assets 2022: $1,447,0412022Assets 2023: $1,525,484Liabilities 2023: $14,370Net Assets 2023: $1,511,1142023Assets 2024: $1,576,623Liabilities 2024: $880Net Assets 2024: $1,575,7432024

Highlighted filing

2024

Assets$1,576,623
Liabilities$880
Net Assets$1,575,743
Open 2024 Filing

Operations Trend

Revenue Growth12th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$800K$600K$400K$200K$0-$200KExpenses 2012: $212,4552012Revenue 2013: $245,785Expenses 2013: $208,064Net Income 2013: $37,7212013Revenue 2014: $342,509Expenses 2014: $332,101Net Income 2014: $10,4082014Revenue 2015: $328,170Expenses 2015: $334,502Net Income 2015: -$6,3322015Revenue 2016: $428,514Expenses 2016: $413,923Net Income 2016: $14,5912016Revenue 2017: $489,566Expenses 2017: $466,756Net Income 2017: $22,8102017Revenue 2018: $418,227Expenses 2018: $365,242Net Income 2018: $52,9852018Revenue 2019: $434,192Expenses 2019: $434,313Net Income 2019: -$1212019Revenue 2020: $703,990Expenses 2020: $321,678Net Income 2020: $382,3122020Revenue 2021: $662,662Expenses 2021: $437,190Net Income 2021: $225,4722021Revenue 2022: $498,897Expenses 2022: $557,781Net Income 2022: -$58,8842022Revenue 2023: $730,096Expenses 2023: $656,324Net Income 2023: $73,7722023Revenue 2024: $596,320Expenses 2024: $553,048Net Income 2024: $43,2722024

Highlighted filing

2024

Revenue$596,320
Expenses$553,048
Net Income$43,272
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,576,623
Liabilities
$880
Net assets
$1,575,743
Revenue
$596,320
Expenses
$553,048
Net income
$43,272
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$1.58$0.00$1.58$0.60$0.55$0.04
2023Detailed filing. Detailed filing data is available for this year.$1.53$0.01$1.51$0.73$0.66$0.07
2022Detailed filing. Detailed filing data is available for this year.$1.46$0.01$1.45$0.50$0.56$0.06
2021Detailed filing. Detailed filing data is available for this year.$1.64$0.02$1.62$0.66$0.44$0.23
2020Detailed filing. Detailed filing data is available for this year.$1.38$0.00$1.38$0.70$0.32$0.38
2019Detailed filing. Detailed filing data is available for this year.$0.94$0.01$0.93$0.43$0.43$0.00
2018Detailed filing. Detailed filing data is available for this year.$0.85$0.00$0.84$0.42$0.37$0.05
2017Detailed filing. Detailed filing data is available for this year.$0.88$0.01$0.88$0.49$0.47$0.02
2016Detailed filing. Detailed filing data is available for this year.$0.83$0.01$0.82$0.43$0.41$0.01
2015Detailed filing. Detailed filing data is available for this year.$0.90$0.01$0.88$0.33$0.33$0.01
2014Detailed filing. Detailed filing data is available for this year.$0.94$0.01$0.93$0.34$0.33$0.01
2013Detailed filing. Detailed filing data is available for this year.$1.04$0.11$0.92$0.25$0.21$0.04
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.99$0.15$0.84$0.21
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
May 7, 2025
Return Version
2024v5.1
Gross Receipts
$1,410,578
Mission and Program Overview

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.

The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophy by exchanging information and promoting progress on research, treatment and prevention.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,361,136$1,380,243▲ $19,107
Cash and Non-Interest-Bearing Accounts$158,398$164,550▲ $6,152
Prepaid Expenses and Deferred Charges$1,706$31,830▲ $30,124
Total Assets$1,525,484$1,576,623▲ $51,139
Other Assets Total$4,244--
Liabilities
Accounts Payable and Accrued Expenses$14,370$880▼ $13,490
Total Liabilities$14,370$880▼ $13,490
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$619,484$999,175▲ $379,691
Net Assets With Donor Restrictions$891,630$576,568▼ $315,062
Total Net Assets Fund Balance$1,511,114$1,575,743▲ $64,629
Total Liabilities and Net Assets / Fund Balance$1,525,484$1,576,623▲ $51,139

Asset Categories

AssetBook ValueDepreciationBasis
Equipment-$21,003$21,003

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2024$1,361,136-▲ $44,107-$1,380,243
2023$1,199,928$71,228▲ $145,480$2,500$1,361,136
2022$1,392,526$55,235▼ $192,833$2,000$1,199,928
2021$931,328$371,493▲ $114,168$9,463$1,392,526
2020$833,525$16,999▲ $96,804-$931,328
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseTotal
Diane FennimoreExecutive DirectorFT$94,381$94,381

Board Members and Trustees

NameTitle
Ron ChapleauPresident
Dr Stephanie KellerVice President
Amber FreedDirector
Dr Joseph HaciaDirector
Gregory HufferDirector
John KaprichDirector
Marcie FloresDirector
Margaret McintyreDirector
Marilyn SchmiedelDirector
Michele HerndonDirector
Mousumi BoseDirector
Shannon ReedSecretary
Donna SkwirutTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$530,502
Program Service Revenue
$0
Investment Income
$65,818
Other Revenue
$0
All Other Contributions
$530,502
Change in Net Assets
$43,272

Audited Revenue Reconciliation

Revenue per Audited Statements
$596,320
Revenue Not Reported on Form 990
$21,357
Total Revenue per Audited Statements
$617,677
Total Revenue per Form 990
$596,320
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$269,949
Salaries, Compensation, and Employee Benefits$210,099
Grants and Similar Amounts Paid$73,000
Total Fundraising Expense$28,677
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Conferences and Meetings$112,426$14,957$115$127,498
Other Salaries and Wages$51,030$36,283$9,701$97,014
Current Officers, Directors, Trustees, and Key Employees$49,644$35,299$9,438$94,381
Information Technology$46,724$14,767$626$62,117
Grants to Domestic Orgs$40,000--$40,000
Foreign Grants$33,000--$33,000
Fees for Services Accounting$9,909$8,571$1,179$19,659
Payroll Taxes$9,550$6,788$1,815$18,153
Occupancy$7,606$6,224-$13,830
Office Expenses$4,758$4,800$3,062$12,620
Fees for Services Other$5,193$4,492$618$10,303
Fees for Services Management$3,588$3,103$427$7,118
Insurance$2,142$1,752-$3,894
Other Expenses$1,072$877$1,612$3,561
Advertising$322$234$29$585
Other Employee Benefits$290$206$55$551
Total Functional Expenses$382,074$142,297$28,677$553,048

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$553,048
Total Expenses per Audited Statements$553,048
Total Expenses per Form 990$553,048
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Children's National HospitalSilver Spring, MD--$20,000
Kennedy Krieger InstituteBaltimore, MD-Research$20,000

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Federal income taxes-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“- The Foundation Form 990 was prepared by its Accountant, ULF Staff and Board members. A copy of the complete Form 990 was e-mailed to the ULF and reviewed by the Finance Committee which includes, but is not necessarily limited to, the Board President, Treasurer, Executive Director with assistance from the Financial and Operations Coordinator. The Finance Committee members reviewed the entire form and if adjustments might be needed, reached out to the Accountant to discuss and assess.”

Form 990, Part VI, Section B, Line 12C

“- The Foundation regularly and consistently monitors and enforces compliance with its conflict of interest policy by considering any real or potential conflicts prior to any voting among the board in official meetings. Members are asked if there are any conflicts if it is not known based on previous disclosure documentation.”

Form 990, Part VI, Section B, Line 15A/B

“- The compensation of the organizations key employees are set by the Board of Directors. The Board uses data as to comparable compensation for similarly qualified persons in functionally comparable positions at similarly situated organizations when setting compensation amounts. The same procedures are used for all other employees.”

Form 990, Part VI, Section C, Line 19

“- The organization makes its governing documents, conflict of interest policy and financial statements available to the public. All of these documents are available upon request to anyone at anytime.”

Filing and Contact Details

Filer

Filer Name
United Leukodystrophy Foundation Inc
EIN
35-1557361
Phone
8157483211
Address
224 N SECOND ST, DEKALB, IL 60115

Signing Officer

Name
Ron Chapleau
Title
President
Phone
8157483211
Signed
2025-05-07
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Ron Chapleau
Formed
1982
Legal Domicile
In
Voting Board Members
13
Independent Board Members
13
Employees
3

Preparer

Firm
J Scott Chilton CPA
Address
1013 N 1ST ST, DEKALB, IL 60115
Preparer
J Scott Chilton CPA
Phone
8157588141
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