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Dysautonomia 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.

Category: Diseases, Disorders, Medical Disciplines / Nerve, Muscle and Bone Diseases (NTEE)

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$1.22M (2023)

Expenses
$1.94M (2023)

Total Assets
$1.5M (2023)

Total Liabilities
$199k (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
$1,215,749
Expenses
$1,940,535
Net Income
-$724,786
Net Assets
$1,304,849
Notable Sources of Revenue Percent of Total Revenue
Contributions $572,214
47.1%
Program Services $0
Investment Income $75,547
6.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $567,988
46.7%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $253,266
13.1%
Professional Fundraising Fees $0
Other Salaries and Wages $111,738
5.8%
Assets/Debt
Total Assets $1,503,412
Total Liabilities $198,563
Net Assets $1,304,849
Compensation
Key Employees and Officers Compensation Related Other
Lanie Etkind (Executive Dir.) $225,000 $0 $28,266
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0
Gregg Meyers (Director) $0 $0 $0
Daniel Landau (Director) $0 $0 $0
Brian Stillman (Director) $0 $0 $0
Rebecca Sernovitz (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,577,517
Expenses
$1,830,056
Net Income
-$252,539
Net Assets
$2,028,849
Notable Sources of Revenue Percent of Total Revenue
Contributions $638,170
40.5%
Program Services $0
Investment Income $20,987
1.3%
Bond Proceeds $0
Royalties $5,073
0.3%
Rental Property Income $0
Net Fundraising $913,287
57.9%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $281,357
15.4%
Professional Fundraising Fees $0
Other Salaries and Wages $94,919
5.2%
Assets/Debt
Total Assets $2,168,499
Total Liabilities $139,650
Net Assets $2,028,849
Compensation
Key Employees and Officers Compensation Related Other
Lanie Etkind (Executive Dir.) $235,000 $0 $46,357
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0
Gregg Meyers (Director) $0 $0 $0
Daniel Landau (Director) $0 $0 $0
Brian Stillman (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$2,387,593
Expenses
$1,850,796
Net Income
$536,797
Net Assets
$2,292,958
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,519,164
63.6%
Program Services $0
Investment Income $8,963
0.4%
Bond Proceeds $0
Royalties $3,468
0.1%
Rental Property Income $0
Net Fundraising $855,998
35.9%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $262,655
14.2%
Professional Fundraising Fees $0
Other Salaries and Wages $123,906
6.7%
Assets/Debt
Total Assets $2,301,553
Total Liabilities $8,595
Net Assets $2,292,958
Compensation
Key Employees and Officers Compensation Related Other
Lanie Etkind (Executive Dir.) $218,077 $0 $44,578
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0
Gregg Meyers (Director) $0 $0 $0
Daniel Landau (Director) $0 $0 $0
Brian Stillman (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,813,432
Expenses
$1,826,476
Net Income
-$13,044
Net Assets
$1,753,626
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,042,273
57.5%
Program Services $0
Investment Income $6,514
0.4%
Bond Proceeds $0
Royalties $94,880
5.2%
Rental Property Income $0
Net Fundraising $669,765
36.9%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $230,201
12.6%
Professional Fundraising Fees $0
Other Salaries and Wages $89,830
4.9%
Assets/Debt
Total Assets $1,809,411
Total Liabilities $55,785
Net Assets $1,753,626
Compensation
Key Employees and Officers Compensation Related Other
Lanie Etkind (Executive Dir.) $207,538 $0 $45,890
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,424,379
Expenses
$1,878,693
Net Income
-$454,314
Net Assets
$1,860,719
Notable Sources of Revenue Percent of Total Revenue
Contributions $564,308
39.6%
Program Services $0
Investment Income $39,825
2.8%
Bond Proceeds $0
Royalties $59,066
4.1%
Rental Property Income $0
Net Fundraising $761,180
53.4%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $206,676
11.0%
Professional Fundraising Fees $0
Other Salaries and Wages $105,917
5.6%
Assets/Debt
Total Assets $1,860,719
Total Liabilities $0
Net Assets $1,860,719
Compensation
Key Employees and Officers Compensation Related Other
Lanie Etkind (Executive Dir.) $188,663 $0 $39,325
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
David Steiner (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0
Barbara Waldfogel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,984,961
Expenses
$1,760,177
Net Income
$224,784
Net Assets
$2,229,633
Notable Sources of Revenue Percent of Total Revenue
Contributions $622,052
31.3%
Program Services $0
Investment Income $35,470
1.8%
Bond Proceeds $0
Royalties $126,572
6.4%
Rental Property Income $0
Net Fundraising $1,200,867
60.5%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $174,498
9.9%
Professional Fundraising Fees $0
Other Salaries and Wages $112,500
6.4%
Assets/Debt
Total Assets $2,229,633
Total Liabilities $0
Net Assets $2,229,633
Compensation
Key Employees and Officers Compensation Related Other
Lanie Etkind (Executive Dir.) $152,365 $0 $22,133
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
David Steiner (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0
Barbara Waldfogel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,713,284
Expenses
$2,427,386
Net Income
-$714,102
Net Assets
$2,077,052
Notable Sources of Revenue Percent of Total Revenue
Contributions $401,813
23.5%
Program Services $0
Investment Income $136,184
7.9%
Bond Proceeds $0
Royalties $130,797
7.6%
Rental Property Income $0
Net Fundraising $1,044,490
61.0%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $210,911
8.7%
Professional Fundraising Fees $0
Other Salaries and Wages $104,022
4.3%
Assets/Debt
Total Assets $2,077,052
Total Liabilities $0
Net Assets $2,077,052
Compensation
Key Employees and Officers Compensation Related Other
Paul Schack (Executive Director) $170,831 $0 $0
Lanie Etkind (Executive Dir.) $32,614 $0 $7,466
Faye Ginsburg (President) $0 $0 $0
Allan Cohen (Treasurer) $0 $0 $0
Edward Baranoff (Vice President) $0 $0 $0
Laurent Landau (Vice President) $0 $0 $0
Jeffrey Goldberger (Vice President) $0 $0 $0
Steven Kietz (Vice President) $0 $0 $0
Lisa Newman (Vice President) $0 $0 $0
Paul B Wexler (Vice President) $0 $0 $0
Steven S Fass (Secretary) $0 $0 $0
Jennifer Sonenshein (Director) $0 $0 $0
Howard Weiser (Director) $0 $0 $0
David Steiner (Director) $0 $0 $0
Gerald Adler (Director) $0 $0 $0
Barbara Waldfogel (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,719,922
Expenses
$1,626,677
Net Income
$93,245
Net Assets
$2,791,154
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,603,684
93.2%
Program Services $0
Investment Income $44,055
2.6%
Bond Proceeds $0
Royalties $69,349
4.0%
Rental Property Income $0
Net Fundraising $2,834
0.2%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $204,285
12.6%
Assets/Debt
Total Assets $2,791,154
Total Liabilities $0
Net Assets $2,791,154

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,261,736
Expenses
$1,672,655
Net Income
-$410,919
Net Assets
$2,595,265
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,200,254
95.1%
Program Services $0
Investment Income $70,152
5.6%
Bond Proceeds $0
Royalties $34,660
2.7%
Rental Property Income $0
Net Fundraising -$43,330
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $198,589
11.9%
Professional Fundraising Fees $0
Other Salaries and Wages $108,712
6.5%
Assets/Debt
Total Assets $2,595,265
Total Liabilities $0
Net Assets $2,595,265

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,921,666
Expenses
$2,297,530
Net Income
-$375,864
Net Assets
$3,124,728
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,915,663
99.7%
Program Services $0
Investment Income $100,911
5.3%
Bond Proceeds $0
Royalties $12,254
0.6%
Rental Property Income $0
Net Fundraising -$107,162
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $196,623
8.6%
Professional Fundraising Fees $0
Other Salaries and Wages $100,434
4.4%
Assets/Debt
Total Assets $3,124,728
Total Liabilities $0
Net Assets $3,124,728

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,464,527
Expenses
$2,276,804
Net Income
-$812,277
Net Assets
$3,521,461
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,417,112
96.8%
Program Services $0
Investment Income $53,823
3.7%
Bond Proceeds $0
Royalties $17,598
1.2%
Rental Property Income $0
Net Fundraising -$24,006
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $194,173
8.5%
Professional Fundraising Fees $0
Other Salaries and Wages $108,782
4.8%
Assets/Debt
Total Assets $3,521,461
Total Liabilities $0
Net Assets $3,521,461

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,984,331
Expenses
$2,039,181
Net Income
-$54,850
Net Assets
$4,159,897
Notable Sources of Revenue Percent of Total Revenue
Contributions $2,229,995
> 100%
Program Services $0
Investment Income $45,195
2.3%
Bond Proceeds $0
Royalties $18,944
1.0%
Rental Property Income $0
Net Fundraising -$309,803
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $185,960
9.1%
Professional Fundraising Fees $0
Other Salaries and Wages $56,477
2.8%
Assets/Debt
Total Assets $4,159,897
Total Liabilities $0
Net Assets $4,159,897

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,858,724
Expenses
$1,616,096
Net Income
$242,628
Net Assets
$4,116,432
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,785,570
96.1%
Program Services $0
Investment Income $43,860
2.4%
Bond Proceeds $0
Royalties $51,480
2.8%
Rental Property Income $0
Net Fundraising -$22,186
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $177,523
11.0%
Professional Fundraising Fees $0
Other Salaries and Wages $67,088
4.2%
Assets/Debt
Total Assets $4,116,432
Total Liabilities $0
Net Assets $4,116,432

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.
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 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 Aug.
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 Aug.
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 Aug.
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

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