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Batten Disease Support And Research Association

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.

Category: Diseases, Disorders, Medical Disciplines / Specifically Named Diseases (G8XZ) (NTEE)

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$602k (2024)

Expenses
$967k (2024)

Total Assets
$966k (2024)

Total Liabilities
$198k (2024)

Years with missing data
Years with multiple filings
Source: Form 990 tax filings from 2011 to 2024

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.
2024

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$601,964
Expenses
$967,326
Net Income
-$365,362
Net Assets
$767,989
Notable Sources of Revenue Percent of Total Revenue
Contributions $566,255
94.1%
Program Services $0
Investment Income $35,709
5.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $100,000
10.3%
Professional Fundraising Fees $0
Other Salaries and Wages $230,829
23.9%
Assets/Debt
Total Assets $965,863
Total Liabilities $197,874
Net Assets $767,989
Compensation
Key Employees and Officers Compensation Related Other
Amy Fenton Parker (President &) $100,000 $0 $0
Darlene Royalty (Board Chair) $0 $0 $0
Barbara Wuebbels (Board Vice C) $0 $0 $0
Barbara Mcdonough (Secretary) $0 $0 $0
Fred Surrey (Treasurer) $0 $0 $0
John Ireland (Director) $0 $0 $0
Wayne Kiefer (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Dave Pearce (Director) $0 $0 $0
Suzette James (Director) $0 $0 $0
Fernanda Leal Pardinas (Director) $0 $0 $0
Anthony Ferrandino (Director) $0 $0 $0
Donna Fogel (Director) $0 $0 $0
John Patterson (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2023

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$746,147
Expenses
$952,036
Net Income
-$205,889
Net Assets
$1,120,268
Notable Sources of Revenue Percent of Total Revenue
Contributions $724,656
97.1%
Program Services $0
Investment Income $21,491
2.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $98,500
10.3%
Professional Fundraising Fees $0
Other Salaries and Wages $184,332
19.4%
Assets/Debt
Total Assets $1,203,251
Total Liabilities $82,983
Net Assets $1,120,268
Compensation
Key Employees and Officers Compensation Related Other
Amy Fenton Parker (President &) $98,500 $0 $0
Darlene Royalty (Board Chair) $0 $0 $0
Barbara Wuebbels (Board Vice C) $0 $0 $0
Barbara Mcdonough (Secretary) $0 $0 $0
Fred Surrey (Treasurer) $0 $0 $0
John Ireland (Sibling Rep.) $0 $0 $0
Donna Fogle (Director) $0 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Wayne Kiefer (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
David Pearce (Director) $0 $0 $0
Kyleen Douglas (Director) $0 $0 $0
Suzette James (Director) $0 $0 $0
Fernanda Leal Pardinas (Director) $0 $0 $0
John Patterson (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,099,485
Expenses
$858,302
Net Income
$241,183
Net Assets
$1,273,582
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,064,250
96.8%
Program Services $6,000
0.5%
Investment Income $19,641
1.8%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $9,594
0.9%
Notable Expenses Percent of Total Expenses
Executive Compensation $94,760
11.0%
Professional Fundraising Fees $0
Other Salaries and Wages $165,280
19.3%
Assets/Debt
Total Assets $1,291,125
Total Liabilities $17,543
Net Assets $1,273,582
Compensation
Key Employees and Officers Compensation Related Other
Amy Fenton Parker (President &) $94,760 $0 $0
Darlene Royalty (Board Chair) $0 $0 $0
Barbara Wuebbels (Board Vice C) $0 $0 $0
Fred Surrey (Treasurer) $0 $0 $0
Donna Fogle (Secretary) $0 $0 $0
John Ireland (Director) $0 $0 $0
John Patterson (Director) $0 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Barbara Mcdonough (Director) $0 $0 $0
Trent Lewis (Director) $0 $0 $0
David Pearce (Director) $0 $0 $0
Rene Martinez (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$875,074
Expenses
$668,937
Net Income
$206,137
Net Assets
$1,155,261
Notable Sources of Revenue Percent of Total Revenue
Contributions $811,390
92.7%
Program Services $18,200
2.1%
Investment Income $33,129
3.8%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $12,355
1.4%
Notable Expenses Percent of Total Expenses
Executive Compensation $93,208
13.9%
Professional Fundraising Fees $0
Other Salaries and Wages $174,674
26.1%
Assets/Debt
Total Assets $1,208,507
Total Liabilities $53,246
Net Assets $1,155,261
Compensation
Key Employees and Officers Compensation Related Other
Amy Fenton Parker (President &) $93,208 $0 $0
Darlene Royalty (Board Chair) $0 $0 $0
Barbara Wuebbels (Board Vice C) $0 $0 $0
Bob Jensen (Treasurer) $0 $0 $0
Donna Fogle (Secretary) $0 $0 $0
John Ireland (Sib Represen) $0 $0 $0
Fred Surrey (Director) $0 $0 $0
Brock Benroth (Director) $0 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Barbara Mcdonough (Director) $0 $0 $0
Trent Lewis (Director) $0 $0 $0
David Pearce (Director) $0 $0 $0
Rene Martinez (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,228,607
Expenses
$718,019
Net Income
$510,588
Net Assets
$949,124
Notable Sources of Revenue Percent of Total Revenue
Contributions $968,030
78.8%
Program Services $236,958
19.3%
Investment Income $23,619
1.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $30,086
4.2%
Professional Fundraising Fees $0
Other Salaries and Wages $206,804
28.8%
Assets/Debt
Total Assets $1,028,529
Total Liabilities $79,405
Net Assets $949,124
Compensation
Key Employees and Officers Compensation Related Other
Michelle Churchill (Executive Di) $30,086 $0 $0
Darlene Royalty (President) $0 $0 $0
Barbara Wuebbels (Vice Preside) $0 $0 $0
Donna Fogle (Secretary) $0 $0 $0
Bob Jensen (Treasurer) $0 $0 $0
John Ireland (Sib Represen) $0 $0 $0
Brock Benroth (Director) $0 $0 $0
Mike Collins (Director) $0 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Barbara Mcdonough (Director) $0 $0 $0
Trent Lewis (Director) $0 $0 $0
David Pearce (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$953,611
Expenses
$749,007
Net Income
$204,604
Net Assets
$458,657
Notable Sources of Revenue Percent of Total Revenue
Contributions $883,058
92.6%
Program Services $0
Investment Income $47,608
5.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $22,945
2.4%
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $216,320
28.9%
Assets/Debt
Total Assets $815,440
Total Liabilities $356,783
Net Assets $458,657

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$834,187
Expenses
$948,857
Net Income
-$114,670
Net Assets
$253,334
Notable Sources of Revenue Percent of Total Revenue
Contributions $834,109
100.0%
Program Services $0
Investment Income $78
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $106,000
11.2%
Professional Fundraising Fees $0
Other Salaries and Wages $173,459
18.3%
Assets/Debt
Total Assets $462,370
Total Liabilities $209,036
Net Assets $253,334
Compensation
Key Employees and Officers Compensation Related Other
Marjorie Frazier (Executive Dir.) $106,000 $0 $0
Jennifer Dilley (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Donna Fogle (Director) $0 $0 $0
Bob Jensen (Treasurer) $0 $0 $0
Dave Pearce (Director) $0 $0 $0
Mike Collins (Vice President) $0 $0 $0
Darlene Royalty (Director) $0 $0 $0
Barbara Wuebbels (Director) $0 $0 $0
Rob Geer (President) $0 $0 $0
Tony Ferrandino (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$812,976
Expenses
$1,054,316
Net Income
-$241,340
Net Assets
$339,792
Notable Sources of Revenue Percent of Total Revenue
Contributions $803,869
98.9%
Program Services $0
Investment Income $9,107
1.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $98,289
9.3%
Professional Fundraising Fees $0
Other Salaries and Wages $152,613
14.5%
Assets/Debt
Total Assets $664,508
Total Liabilities $324,716
Net Assets $339,792
Compensation
Key Employees and Officers Compensation Related Other
Marjorie Frazier (Executive Dir.) $98,289 $0 $0
Kristen Drago (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Joel Karg (Treasurer) $0 $0 $0
Donna Fogle (Director) $0 $0 $0
Bob Jensen (Director) $0 $0 $0
Dave Pearce (Director) $0 $0 $0
Mike Collins (Secretary) $0 $0 $0
Darlene Royalty (Director) $0 $0 $0
Barbara Wuebbels (Director) $0 $0 $0
Tracy Vanhoutan (Vice President) $0 $0 $0
Rob Geer (President) $0 $0 $0
Tony Ferrandino (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$994,203
Expenses
$880,137
Net Income
$114,066
Net Assets
$566,681
Notable Sources of Revenue Percent of Total Revenue
Contributions $977,295
98.3%
Program Services $0
Investment Income $16,908
1.7%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $117,056
13.3%
Professional Fundraising Fees $0
Other Salaries and Wages $138,235
15.7%
Assets/Debt
Total Assets $657,635
Total Liabilities $90,954
Net Assets $566,681
Compensation
Key Employees and Officers Compensation Related Other
Marjorie Frazier (Executive Dir.) $117,056 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Kate Haller (Director) $0 $0 $0
Joel Karg (Treasurer) $0 $0 $0
Donna Fogle (Director) $0 $0 $0
Bob Jensen (Director) $0 $0 $0
Dave Pearce (Director) $0 $0 $0
Mike Collins (Secretary) $0 $0 $0
Darlene Royalty (Director) $0 $0 $0
Barbara Wuebbels (Director) $0 $0 $0
Tracy Vanhoutan (Vice President) $0 $0 $0
Rob Geer (President) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$631,459
Expenses
$836,483
Net Income
-$205,024
Net Assets
$476,868
Notable Sources of Revenue Percent of Total Revenue
Contributions $618,249
97.9%
Program Services $0
Investment Income $13,210
2.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $118,412
14.2%
Professional Fundraising Fees $0
Other Salaries and Wages $165,826
19.8%
Assets/Debt
Total Assets $728,236
Total Liabilities $251,368
Net Assets $476,868
Compensation
Key Employees and Officers Compensation Related Other
Marjorie Frazier (Executive Dir.) $91,412 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Craig Benson (Director) $0 $0 $0
Joel Karg (Treasurer) $0 $0 $0
Christopher Lowden (Secretary) $0 $0 $0
Christopher Hawkins (Director) $0 $0 $0
Dave Pearce (Director) $0 $0 $0
Mike Collins (Director) $0 $0 $0
Kim Zellmer (President) $0 $0 $0
Barbara Wuebbels (Director) $0 $0 $0
Tracy Vanhoutan (Vice President) $0 $0 $0
Rob Geer (Vice President) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$647,880
Expenses
$936,637
Net Income
-$288,757
Net Assets
$681,472
Notable Sources of Revenue Percent of Total Revenue
Contributions $621,576
95.9%
Program Services $0
Investment Income $9,182
1.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $17,122
2.6%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $80,000
8.5%
Professional Fundraising Fees $0
Other Salaries and Wages $162,459
17.3%
Assets/Debt
Total Assets $692,878
Total Liabilities $11,406
Net Assets $681,472
Compensation
Key Employees and Officers Compensation Related Other
Marjorie Frazier (Executive Dir.) $80,000 $0 $0
Tony Ferrandino (Director) $0 $0 $0
Craig Benson (Director) $0 $0 $0
Joel Karg (Treasurer) $0 $0 $0
Christopher Lowden (Secretary) $0 $0 $0
Christopher Hawkins (Director) $0 $0 $0
Chris Dainiak (Director) $0 $0 $0
Mike Collins (Director) $0 $0 $0
Kim Zellmer (President) $0 $0 $0
Tracy Vanhoutan (Vice President) $0 $0 $0
Rob Geer (Vice President) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$533,503
Expenses
$769,292
Net Income
-$235,789
Net Assets
$956,314
Notable Sources of Revenue Percent of Total Revenue
Contributions $528,776
99.1%
Program Services $0
Investment Income $3,880
0.7%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $847
0.2%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $97,250
12.6%
Professional Fundraising Fees $0
Other Salaries and Wages $80,456
10.5%
Assets/Debt
Total Assets $969,288
Total Liabilities $12,974
Net Assets $956,314

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$647,251
Expenses
$562,992
Net Income
$84,259
Net Assets
$1,166,180
Notable Sources of Revenue Percent of Total Revenue
Contributions $499,007
77.1%
Program Services $0
Investment Income $6,556
1.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $141,122
21.8%
Sales of Assets $566
0.1%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $41,333
7.3%
Professional Fundraising Fees $0
Other Salaries and Wages $91,550
16.3%
Assets/Debt
Total Assets $1,173,122
Total Liabilities $6,942
Net Assets $1,166,180

Document Links

Fiscal Year Ending April
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$914,982
Expenses
$830,634
Net Income
$84,348
Net Assets
$1,108,273
Notable Sources of Revenue Percent of Total Revenue
Contributions $639,053
69.8%
Program Services $0
Investment Income $5,628
0.6%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $270,301
29.5%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $62,000
7.5%
Professional Fundraising Fees $0
Other Salaries and Wages $140,787
16.9%
Assets/Debt
Total Assets $1,129,904
Total Liabilities $21,631
Net Assets $1,108,273

Document Links

Fiscal Year Ending April
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 April
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 April
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 April
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 April
2006

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 April
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 April
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 April
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 April
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 July
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

What Is 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.

Which Organizations Are Here?

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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For those interested in acquiring the original data from the source, here’s where our data comes from:

  • Raw filing data. Includes EINs and summary financials as structured data.
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  • Form 990 documents. Prior to 2017, these documents were obtained and processed by Public.Resource.org and ProPublica. Bulk PDF downloads since 2017 are available from the IRS.
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  • Audits. PDFs of single or program-specific audits for nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year. Available for fiscal year 2015 and later.

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