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The United Leukodystrophy Foundation Inc

Organization summary

Type of Nonprofit

Designated as a Organizations for any of the following purposes: religious, educational, charitable, scientific, literary, testing for public safety, fostering national or international amateur sports competition (as long as it doesn't provide athletic facilities or equipment), or the prevention of cruelty to children or animals.

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$730k (2023)

Expenses
$656k (2023)

Total Assets
$1.53M (2023)

Total Liabilities
$14.4k (2023)

Source: Form 990 tax filings from 2011 to 2023

Tax Filings by Year

Form 990 is an information return that most organizations claiming federal tax-exempt status must file yearly with the IRS. Nonprofit Explorer has IRS digitized Form 990 data for filings processed in 2012 and later. If this organization filed an amended return, it may not be reflected below. Duplicate download links may indicate a resubmission or amendment to this organization's original return. Form 990 data is from the IRS.

Fiscal Year Ending Dec.
2023

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$730,096
Expenses
$656,324
Net Income
$73,772
Net Assets
$1,511,114
Notable Sources of Revenue Percent of Total Revenue
Contributions $574,918
78.7%
Program Services $0
Investment Income $31,354
4.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $123,824
17.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $28,150
4.3%
Professional Fundraising Fees $0
Other Salaries and Wages $123,135
18.8%
Assets/Debt
Total Assets $1,525,484
Total Liabilities $14,370
Net Assets $1,511,114
Compensation
Key Employees and Officers Compensation Related Other
Diane Fennimore (Executive Director) $28,150 $0 $0
Donna Skwirut (Treasurer) $0 $0 $0
Shannon Reed (Secretary) $0 $0 $0
Ron Chapleau (President) $0 $0 $0
Mousumi Bose (Director) $0 $0 $0
Amber Freed (Director) $0 $0 $0
Gregory Huffer (Director) $0 $0 $0
Dr Joseph Hacia (Director) $0 $0 $0
Dr Stephanie Keller (Vice President) $0 $0 $0
Marcie Flores (Director) $0 $0 $0
John Kaprich (Director) $0 $0 $0
Margaret Mcintyre (Director) $0 $0 $0
Marilyn Schmiedel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$498,897
Expenses
$557,781
Net Income
-$58,884
Net Assets
$1,447,041
Notable Sources of Revenue Percent of Total Revenue
Contributions $567,746
> 100%
Program Services $0
Investment Income $37,387
7.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$111,422
Net Inventory Sales $5,186
1.0%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $61,092
11.0%
Professional Fundraising Fees $0
Other Salaries and Wages $110,903
19.9%
Assets/Debt
Total Assets $1,456,386
Total Liabilities $9,345
Net Assets $1,447,041
Compensation
Key Employees and Officers Compensation Related Other
Christopher Rice (Executive Director) $61,092 $0 $0
Donna Skwirut (Treasurer) $0 $0 $0
Sa Von Rudenick (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Kristie De Marco (Director) $0 $0 $0
Dr Joseph Hacia (Director) $0 $0 $0
Dr Stephanie Keller (Director) $0 $0 $0
Marcie Flores (Director) $0 $0 $0
John Kaprich (Director) $0 $0 $0
Margaret Mcintyre (Director) $0 $0 $0
Shannon Reed (Director) $0 $0 $0
Marilyn Schmiedel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$662,662
Expenses
$437,190
Net Income
$225,472
Net Assets
$1,624,722
Notable Sources of Revenue Percent of Total Revenue
Contributions $570,742
86.1%
Program Services $0
Investment Income $43,130
6.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $47,141
7.1%
Net Inventory Sales $1,649
0.2%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $54,662
12.5%
Professional Fundraising Fees $0
Other Salaries and Wages $90,963
20.8%
Assets/Debt
Total Assets $1,641,493
Total Liabilities $16,771
Net Assets $1,624,722
Compensation
Key Employees and Officers Compensation Related Other
Christopher Rice (Executive Director) $54,662 $0 $0
Alan Fingeroot (Treasurer) $0 $0 $0
Margaret Halter (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Kristie De Marco (Director) $0 $0 $0
Dr Joseph Hacia (Director) $0 $0 $0
Dr Stephanie Keller (Director) $0 $0 $0
Sa Von Rudenick (Director) $0 $0 $0
Donna Skwirut (Director) $0 $0 $0
Anne Brendel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$703,990
Expenses
$321,678
Net Income
$382,312
Net Assets
$1,375,354
Notable Sources of Revenue Percent of Total Revenue
Contributions $650,492
92.4%
Program Services $0
Investment Income $19,386
2.8%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $2,164
0.3%
Sales of Assets $14,539
2.1%
Net Inventory Sales $7,109
1.0%
Other Revenue $10,300
1.5%
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $80,946
25.2%
Assets/Debt
Total Assets $1,379,409
Total Liabilities $4,055
Net Assets $1,375,354
Compensation
Key Employees and Officers Compensation Related Other
Alan Fingeroot (Treasurer) $0 $0 $0
Margaret Halter (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Claudette Collier (Director) $0 $0 $0
Kristie De Marco (Director) $0 $0 $0
Dr Joseph Hacia (Director) $0 $0 $0
Colleen Kintner (Director) $0 $0 $0
Dr Stephanie Keller (Director) $0 $0 $0
Sa Von Rudenick (Director) $0 $0 $0
Yolanda Chacon Serna (Director) $0 $0 $0
Donna Skwirut (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$434,192
Expenses
$434,313
Net Income
-$121
Net Assets
$930,163
Notable Sources of Revenue Percent of Total Revenue
Contributions $391,066
90.1%
Program Services $0
Investment Income $22,069
5.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $12,100
2.8%
Sales of Assets $6,417
1.5%
Net Inventory Sales $2,540
0.6%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $49,840
11.5%
Assets/Debt
Total Assets $939,092
Total Liabilities $8,929
Net Assets $930,163
Compensation
Key Employees and Officers Compensation Related Other
Alan Fingeroot (Treasurer) $0 $0 $0
Margaret Halter (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Claudette Collier (Director) $0 $0 $0
Kristie De Marco (Director) $0 $0 $0
Dr Joseph Hacia (Director) $0 $0 $0
Colleen Kintner (Director) $0 $0 $0
Dr Stephanie Keller (Director) $0 $0 $0
Sa Von Rudenick (Director) $0 $0 $0
Yolanda Chacon Serna (Director) $0 $0 $0
Donna Skwirut (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$418,227
Expenses
$365,242
Net Income
$52,985
Net Assets
$842,214
Notable Sources of Revenue Percent of Total Revenue
Contributions $385,608
92.2%
Program Services $0
Investment Income $27,837
6.7%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $10,745
2.6%
Sales of Assets -$8,051
Net Inventory Sales $2,088
0.5%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $76,598
21.0%
Assets/Debt
Total Assets $845,512
Total Liabilities $3,298
Net Assets $842,214
Compensation
Key Employees and Officers Compensation Related Other
Alan Fingeroot (Treasurer) $0 $0 $0
Margaret Halter (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Yvonne Rauner (Director) $0 $0 $0
Joseph Changle (Director) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Douglas Bermel (Director) $0 $0 $0
Rita Hedrick Helmick (Director) $0 $0 $0
Randall Dahl (Director) $0 $0 $0
Colleen Kintner (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$489,566
Expenses
$466,756
Net Income
$22,810
Net Assets
$876,546
Notable Sources of Revenue Percent of Total Revenue
Contributions $395,327
80.8%
Program Services $0
Investment Income $26,446
5.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $57,851
11.8%
Net Inventory Sales $9,942
2.0%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $75,790
16.2%
Professional Fundraising Fees $0
Other Salaries and Wages $41,731
8.9%
Assets/Debt
Total Assets $883,575
Total Liabilities $7,029
Net Assets $876,546
Compensation
Key Employees and Officers Compensation Related Other
Roberta Burgstone (Executive Director) $75,790 $0 $0
Alan Fingeroot (Treasurer) $0 $0 $0
Margaret Halter (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Yvonne Rauner (Director) $0 $0 $0
Joseph Changle (Director) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Douglas Bermel (Director) $0 $0 $0
Rita Hedrick Helmick (Director) $0 $0 $0
Colleen Kintner (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$428,514
Expenses
$413,923
Net Income
$14,591
Net Assets
$823,444
Notable Sources of Revenue Percent of Total Revenue
Contributions $283,998
66.3%
Program Services $0
Investment Income $22,422
5.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $112,827
26.3%
Net Inventory Sales $9,267
2.2%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $83,060
20.1%
Professional Fundraising Fees $0
Other Salaries and Wages $27,176
6.6%
Assets/Debt
Total Assets $833,446
Total Liabilities $10,002
Net Assets $823,444
Other
Reported conflict of interest transactions
Compensation
Key Employees and Officers Compensation Related Other
Roberta Burgstone (Executive Director) $83,060 $0 $0
Alan Fingeroot (Treasurer) $0 $0 $0
Michelle Fingeroot (Director) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
Margaret Halter (Secretary) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Yvonne Rauner (Director) $0 $0 $0
Joseph Changle (Director) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Douglas Bermel (Director) $0 $0 $0
Rita Hedrick Helmick (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$328,170
Expenses
$334,502
Net Income
-$6,332
Net Assets
$881,918
Notable Sources of Revenue Percent of Total Revenue
Contributions $276,192
84.2%
Program Services $0
Investment Income $22,790
6.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $20,512
6.3%
Net Inventory Sales $8,676
2.6%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $28,846
8.6%
Professional Fundraising Fees $0
Other Salaries and Wages $66,450
19.9%
Assets/Debt
Total Assets $896,807
Total Liabilities $14,889
Net Assets $881,918
Other
Reported conflict of interest transactions
Compensation
Key Employees and Officers Compensation Related Other
Roberta Burgstone (Executive Director) $28,846 $0 $0
Alan Fingeroot (Treasurer) $0 $0 $0
Michelle Fingeroot (Secretary) $0 $0 $0
Ron Chapleau (Vice President) $0 $0 $0
Marla Chapleau (Director) $0 $0 $0
John Wolf (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Yvonne Rauner (Director) $0 $0 $0
Joseph Changle (Director) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Douglas Bermel (Director) $0 $0 $0
Diane Bermel (Director) $0 $0 $0
Rita Hedrick Helmick (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$342,509
Expenses
$332,101
Net Income
$10,408
Net Assets
$928,701
Notable Sources of Revenue Percent of Total Revenue
Contributions $287,870
84.0%
Program Services $0
Investment Income $26,711
7.8%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $25,002
7.3%
Net Inventory Sales $2,926
0.9%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $52,962
15.9%
Assets/Debt
Total Assets $938,310
Total Liabilities $9,609
Net Assets $928,701
Other
Reported conflict of interest transactions
Compensation
Key Employees and Officers Compensation Related Other
Alan Fingeroot (Treasurer) $0 $0 $0
Michelle Fingeroot (Secretary) $0 $0 $0
Ron Chapleau (Director) $0 $0 $0
Marla Chapleau (Director) $0 $0 $0
John Wolf (Director) $0 $0 $0
Chad Borodychuk (Vice President) $0 $0 $0
Lisa Borodychuk (Director) $0 $0 $0
William Kintner (Director) $0 $0 $0
Colleen Kintner (Director) $0 $0 $0
Robert Rauner (President) $0 $0 $0
Yvonne Rauner (Director) $0 $0 $0
Joseph Changle (Director) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Douglas Bermel (Director) $0 $0 $0
Diane Bermel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$245,785
Expenses
$208,064
Net Income
$37,721
Net Assets
$924,784
Notable Sources of Revenue Percent of Total Revenue
Contributions $208,565
84.9%
Program Services $0
Investment Income $18,214
7.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $11,228
4.6%
Net Inventory Sales $7,778
3.2%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $40,650
19.5%
Assets/Debt
Total Assets $1,036,524
Total Liabilities $111,740
Net Assets $924,784
Other
Reported conflict of interest transactions
Compensation
Key Employees and Officers Compensation Related Other
Alan Fingeroot (Director) $0 $0 $0
Michelle Fingeroot (Secretary) $0 $0 $0
Ron Chapleau (Director) $0 $0 $0
Marla Chapleau (Director) $0 $0 $0
John Wolf (Director) $0 $0 $0
Chad Borodychuk (Director) $0 $0 $0
Lisa Borodychuk (Director) $0 $0 $0
William Kintner (President) $0 $0 $0
Colleen Kintner (Vice President) $0 $0 $0
Robert Rauner (Treasurer) $0 $0 $0
Yvonne Rauner (Director) $0 $0 $0
Joseph Changle (Director) $0 $0 $0
Joyce Changle (Director) $0 $0 $0
Douglas Bermel (Director) $0 $0 $0
Diane Bermel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$245,016
Expenses
$212,455
Net Income
$32,561
Net Assets
$836,703
Notable Sources of Revenue Percent of Total Revenue
Contributions $213,366
87.1%
Program Services $0
Investment Income $19,436
7.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $3,571
1.5%
Net Inventory Sales $8,643
3.5%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $41,480
19.5%
Assets/Debt
Total Assets $985,220
Total Liabilities $148,517
Net Assets $836,703

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$384,883
Expenses
$275,324
Net Income
$109,559
Net Assets
$756,925
Notable Sources of Revenue Percent of Total Revenue
Contributions $354,442
92.1%
Program Services $0
Investment Income $16,898
4.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $7,121
1.9%
Net Inventory Sales $6,422
1.7%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $24,000
8.7%
Professional Fundraising Fees $0
Other Salaries and Wages $45,837
16.6%
Assets/Debt
Total Assets $867,718
Total Liabilities $110,793
Net Assets $756,925

Document Links

Fiscal Year Ending Dec.
2010

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2009

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2008

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2007

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2005

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2004

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2003

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2002

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2001

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

About This Data

Nonprofit Explorer includes summary data for nonprofit tax returns and full Form 990 documents, in both PDF and digital formats.

The summary data contains information processed by the IRS during the 2012-2019 calendar years; this generally consists of filings for the 2011-2018 fiscal years, but may include older records. This data release includes only a subset of what can be found in the full Form 990s.

In addition to the raw summary data, we link to PDFs and digital copies of full Form 990 documents wherever possible. This consists of separate releases by the IRS of Form 990 documents processed by the agency, which we update regularly.

We also link to copies of audits nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year since 2016. These audits are copied from the Federal Audit Clearinghouse.

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Every organization that has been recognized as tax exempt by the IRS has to file Form 990 every year, unless they make less than $200,000 in revenue and have less than $500,000 in assets, in which case they have to file form 990-EZ. Organizations making less than $50,000 don’t have to file either form but do have to let the IRS they’re still in business via a Form 990N "e-Postcard."

Nonprofit Explorer has organizations claiming tax exemption in each of the 27 subsections of the 501(c) section of the tax code, and which have filed a Form 990, Form 990EZ or Form 990PF. Taxable trusts and private foundations that are required to file a form 990PF are also included. Small organizations filing a Form 990N "e-Postcard" are not included in this data.

Types of Nonprofits

There are 27 nonprofit designations based on the numbered subsections of section 501(c) of the tax code. See the list »

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