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Williams Syndrome Association 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 / Birth Defects and Genetic Diseases (NTEE)

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$2.42M (2022)

Expenses
$2.35M (2022)

Total Assets
$2.89M (2022)

Total Liabilities
$269k (2022)

Source: Form 990 tax filings from 2011 to 2022

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.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$2,421,502
Expenses
$2,351,418
Net Income
$70,084
Net Assets
$2,623,339
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,924,528
79.5%
Program Services $491,682
20.3%
Investment Income $54,144
2.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$58,818
Sales of Assets $3,402
0.1%
Net Inventory Sales $6,564
0.3%
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $220,607
9.4%
Professional Fundraising Fees $0
Other Salaries and Wages $531,464
22.6%
Assets/Debt
Total Assets $2,892,153
Total Liabilities $268,814
Net Assets $2,623,339
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Director Thru Jul'22) $130,135 $0 $7,972
Mary Van Haneghan (Executive Director As Of Jul'22) $82,500 $0 $0
Cyndra Cole (President) $0 $0 $0
Scott Ottenheimer (Treasurer) $0 $0 $0
Matt Bartow (Secretary) $0 $0 $0
Meredith Greene (Vice President) $0 $0 $0
Ryan Cordy (Trustee) $0 $0 $0
Kelly Wei (Trustee) $0 $0 $0
Brendan Lemieux (Trustee) $0 $0 $0
Ellen Hoch (Trustee) $0 $0 $0
Clancey Hopper (Trustee) $0 $0 $0
Amy Nussbaum (Trustee) $0 $0 $0
Aine Smalley (Trustee) $0 $0 $0
Melissa Murphy (Trustee) $0 $0 $0
Bill Palmer (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,472,394
Expenses
$1,309,219
Net Income
$163,175
Net Assets
$2,963,532
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,366,018
92.8%
Program Services $55,858
3.8%
Investment Income $48,046
3.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$43,494
Sales of Assets $45,966
3.1%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $120,232
9.2%
Professional Fundraising Fees $0
Other Salaries and Wages $445,290
34.0%
Assets/Debt
Total Assets $3,106,665
Total Liabilities $143,133
Net Assets $2,963,532
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Di) $120,232 $0 $0
Cyndra Cole (President) $0 $0 $0
Scott Ottenheimer (Vice Preside) $0 $0 $0
Matthew Bartow (Secretary) $0 $0 $0
Judy Van Handel (Treasurer) $0 $0 $0
Jocelyn Krebs (Trustee) $0 $0 $0
Tara Momplaisir (Trustee) $0 $0 $0
Marty Levinson (Trustee) $0 $0 $0
Clancey Hopper (Trustee) $0 $0 $0
Ryan Cordry (Trustee) $0 $0 $0
Meredith Greene (Trustee) $0 $0 $0
Ellen Hoch (Trustee) $0 $0 $0
Brenden Lemieux (Trustee) $0 $0 $0
Kelly Wei (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,646,364
Expenses
$1,007,372
Net Income
$638,992
Net Assets
$2,612,021
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,548,029
94.0%
Program Services $11,189
0.7%
Investment Income $57,857
3.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$23,418
Sales of Assets $52,707
3.2%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $118,552
11.8%
Professional Fundraising Fees $0
Other Salaries and Wages $487,241
48.4%
Assets/Debt
Total Assets $2,830,051
Total Liabilities $218,030
Net Assets $2,612,021
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Di) $118,552 $0 $0
Jocelyn Krebs (President) $0 $0 $0
Cyndra Cole (Vice Preside) $0 $0 $0
Scott Ottenheimer (Treasurer ) $0 $0 $0
Tara Momplaisir (Secretary) $0 $0 $0
Marty Levinson (Trustee) $0 $0 $0
Clancey Hopper (Trustee/Ws A) $0 $0 $0
Maegan Miller (Trustee/Ws A) $0 $0 $0
Melissa Murphy (Trustee) $0 $0 $0
Laurel Rossi (Trustee) $0 $0 $0
Judy Van Handel (Treasurer ) $0 $0 $0
Ryan Cordry (Trustee) $0 $0 $0
Griselda Polanco G (Trustee) $0 $0 $0
Sarah Giddings (Trustee) $0 $0 $0
Marella Holmes (Trustee) $0 $0 $0
Matthew Bartow (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,918,427
Expenses
$1,924,976
Net Income
-$6,549
Net Assets
$1,842,677
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,906,948
99.4%
Program Services $112,832
5.9%
Investment Income $58,466
3.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$188,390
Sales of Assets $28,571
1.5%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $123,546
6.4%
Professional Fundraising Fees $0
Other Salaries and Wages $496,998
25.8%
Assets/Debt
Total Assets $2,349,384
Total Liabilities $506,707
Net Assets $1,842,677
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Di) $123,545 $0 $0
Jocelyn Krebs (President) $0 $0 $0
Cyndra Cole (Vice Preside) $0 $0 $0
Tara Momplaisir (Secretary) $0 $0 $0
Scott Ottenheimer (Treasurer) $0 $0 $0
Alex Streit (Trustee/Ws A) $0 $0 $0
Maegan Miller (Trustee/Ws A) $0 $0 $0
Marty Levinson (Trustee) $0 $0 $0
Melissa Murphy (Trustee) $0 $0 $0
Laurel Rossi (Trustee) $0 $0 $0
Judy Van Handel (Trustee) $0 $0 $0
Ryan Cordry (Trustee) $0 $0 $0
Marella Holmes (Trustee) $0 $0 $0
Matthew Bartow (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,721,623
Expenses
$1,815,665
Net Income
-$94,042
Net Assets
$1,640,546
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,224,251
71.1%
Program Services $390,322
22.7%
Investment Income $61,255
3.6%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$129,595
Sales of Assets $175,390
10.2%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $114,180
6.3%
Professional Fundraising Fees $0
Other Salaries and Wages $338,496
18.6%
Assets/Debt
Total Assets $2,092,938
Total Liabilities $452,392
Net Assets $1,640,546
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Di) $114,180 $0 $0
Melissa Murphy (President) $0 $0 $0
Tricia Purdy (Vice Preside) $0 $0 $0
Carol Patinkin (Secretary) $0 $0 $0
Jeffrey Baer (Treasurer) $0 $0 $0
Alex Streit (Trustee/Ws A) $0 $0 $0
Kate Bierfeldt (Trustee/Ws A) $0 $0 $0
Jocelyn Krebs (Trustee) $0 $0 $0
Marty Levinson (Trustee) $0 $0 $0
Laurel Rossi (Trustee) $0 $0 $0
Scott Ottenheimer (Trustee) $0 $0 $0
Cyndra Cole (Trustee) $0 $0 $0
Stella Beard (Trustee) $0 $0 $0
Sarah Giddings (Trustee) $0 $0 $0
Marella Holmes (Trustee) $0 $0 $0
Matthew Bartow (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,553,403
Expenses
$2,303,746
Net Income
-$750,343
Net Assets
$2,040,604
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,724,379
> 100%
Program Services $76,750
4.9%
Investment Income $53,284
3.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$311,408
Sales of Assets $10,398
0.7%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $116,200
5.0%
Professional Fundraising Fees $0
Other Salaries and Wages $352,370
15.3%
Assets/Debt
Total Assets $2,889,914
Total Liabilities $849,310
Net Assets $2,040,604
Compensation
Key Employees and Officers Compensation Related Other
Aine Smalley (President) $0 $0 $0
Melissa Murphy (Vice President) $0 $0 $0
Carol Patinkin (Secretary) $0 $0 $0
Jeffrey Baer (Treasurer) $0 $0 $0
Seth Nicotra (Ws Adult Rep) $0 $0 $0
Kate Bierfeldt (Ws Adult Rep) $0 $0 $0
Jocelyn Krebs (Trustee) $0 $0 $0
Marty Levinson (Trustee) $0 $0 $0
Laurel Rossi (Trustee) $0 $0 $0
Tricia Purdy (Trustee) $0 $0 $0
Dean Packard (Trustee) $0 $0 $0
Michelle Self (Trustee) $0 $0 $0
Sarah Giddings (Trustee) $0 $0 $0
Marella Holmes (Trustee) $0 $0 $0
Terry Monkaba (Executive Director) $0 $116,198 $9,394

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,561,820
Expenses
$1,628,644
Net Income
-$66,824
Net Assets
$2,548,864
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,167,889
74.8%
Program Services $337,127
21.6%
Investment Income $52,265
3.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$127,887
Sales of Assets $132,426
8.5%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $129,318
7.9%
Professional Fundraising Fees $0
Other Salaries and Wages $299,816
18.4%
Assets/Debt
Total Assets $2,700,635
Total Liabilities $151,771
Net Assets $2,548,864
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Director) $129,318 $0 $7,669
Aine Smalley (President) $0 $0 $0
Melissa Murphy (Vice President) $0 $0 $0
Carol Patinkin (Secretary) $0 $0 $0
Jeffrey Baer (Treasurer) $0 $0 $0
Seth Nicotra (Ws Adult Rep) $0 $0 $0
Kate Bove (Ws Adult Rep) $0 $0 $0
Jocelyn Krebs (Trustee) $0 $0 $0
Marty Levinson (Trustee) $0 $0 $0
Laurel Rossi (Trustee) $0 $0 $0
Tricia Purdy (Trustee) $0 $0 $0
Dean Packard (Trustee) $0 $0 $0
Michelle Self (Trustee) $0 $0 $0
Ron Janowczyk (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,069,811
Expenses
$1,023,153
Net Income
$46,658
Net Assets
$2,647,487
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,057,181
98.8%
Program Services $73,892
6.9%
Investment Income $55,694
5.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$132,990
Sales of Assets $16,034
1.5%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $107,909
10.5%
Professional Fundraising Fees $0
Other Salaries and Wages $235,017
23.0%
Assets/Debt
Total Assets $2,838,437
Total Liabilities $190,950
Net Assets $2,647,487
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Director) $107,910 $0 $7,669
Aine Smalley (President) $0 $0 $0
Doug Betz (Vice President) $0 $0 $0
Carol Patinkin (Secretary) $0 $0 $0
Jeffrey Baer (Treasurer) $0 $0 $0
Anthony Vecchia (Trustee) $0 $0 $0
Melissa Murphy (Trustee) $0 $0 $0
Kate Bove (Ws Adult Rep) $0 $0 $0
Laurel Rossi (Trustee) $0 $0 $0
Sandy Miller (Trustee) $0 $0 $0
Dean Packard (Trustee) $0 $0 $0
Michelle Self (Trustee) $0 $0 $0
Karen Levine (Trustee) $0 $0 $0
Ron Janowczyk (Trustee) $0 $0 $0
Catherine Norlin (Ws Adult Rep) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,527,038
Expenses
$1,352,598
Net Income
$174,440
Net Assets
$2,696,174
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,205,715
79.0%
Program Services $344,646
22.6%
Investment Income $53,900
3.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$164,812
Sales of Assets $87,589
5.7%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $112,514
8.3%
Professional Fundraising Fees $0
Other Salaries and Wages $236,390
17.5%
Assets/Debt
Total Assets $2,712,416
Total Liabilities $16,242
Net Assets $2,696,174
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Director) $107,714 $0 $7,251
Anthony Vecchia (President) $0 $0 $0
Carlos Camarillo (Vice President) $0 $0 $0
Aine Smalley (Secretary) $0 $0 $0
Doug Betz (Director) $0 $0 $0
Jeffrey Baer (Treasurer) $0 $0 $0
Melissa Felsher (Director) $0 $0 $0
Karen Levine (Director) $0 $0 $0
Brett Glaser (Ws Adult Rep) $0 $0 $0
Catherine Norlin (Ws Adult Rep) $0 $0 $0
Sandy Miller (Director) $0 $0 $0
Dean Packard (Director) $0 $0 $0
Michelle Self (Director) $0 $0 $0
Carol Patinkin (Director) $0 $0 $0
Ron Janowczyk (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,042,706
Expenses
$903,866
Net Income
$138,840
Net Assets
$2,512,751
Notable Sources of Revenue Percent of Total Revenue
Contributions $890,583
85.4%
Program Services $149,571
14.3%
Investment Income $52,971
5.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$91,030
Sales of Assets $40,611
3.9%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $96,812
10.7%
Professional Fundraising Fees $0
Other Salaries and Wages $181,573
20.1%
Assets/Debt
Total Assets $2,558,432
Total Liabilities $45,681
Net Assets $2,512,751
Compensation
Key Employees and Officers Compensation Related Other
Terry Monkaba (Executive Director) $96,810 $0 $7,704
Anthony Vecchia (President) $0 $0 $0
Carlos Camarillo (Vice President) $0 $0 $0
Aine Smalley (Secretary) $0 $0 $0
Doug Betz (Treasurer) $0 $0 $0
Jeffrey Baer (Director) $0 $0 $0
Melissa Felsher (Director) $0 $0 $0
Karen Levine (Director) $0 $0 $0
Brett Glaser (Director) $0 $0 $0
Kelley Martin (Director) $0 $0 $0
Sandy Miller (Director) $0 $0 $0
Dean Packard (Director) $0 $0 $0
Michelle Self (Director) $0 $0 $0
Mike Morse (Director) $0 $0 $0
Carol Patinkin (Director) $0 $0 $0
Deb Payne (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,616,387
Expenses
$1,152,747
Net Income
$463,640
Net Assets
$2,226,861
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,106,290
68.4%
Program Services $380,677
23.6%
Investment Income $52,973
3.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$17,598
Sales of Assets $94,045
5.8%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $111,911
9.7%
Professional Fundraising Fees $0
Other Salaries and Wages $189,700
16.5%
Assets/Debt
Total Assets $2,265,510
Total Liabilities $38,649
Net Assets $2,226,861

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,007,723
Expenses
$748,294
Net Income
$259,429
Net Assets
$1,751,461
Notable Sources of Revenue Percent of Total Revenue
Contributions $935,363
92.8%
Program Services $126,278
12.5%
Investment Income $42,280
4.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising -$96,198
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $102,763
13.7%
Professional Fundraising Fees $0
Other Salaries and Wages $166,598
22.3%
Assets/Debt
Total Assets $1,770,939
Total Liabilities $19,478
Net Assets $1,751,461

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 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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