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Charcot Marie Tooth 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
$5.76M (2023)

Expenses
$6.29M (2023)

Total Assets
$9.57M (2023)

Total Liabilities
$0 (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
$5,761,508
Expenses
$6,291,966
Net Income
-$530,458
Net Assets
$9,566,018
Notable Sources of Revenue Percent of Total Revenue
Contributions $4,357,172
75.6%
Program Services $1,308,834
22.7%
Investment Income $45,563
0.8%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $32,309
0.6%
Net Inventory Sales $0
Other Revenue $17,630
0.3%
Notable Expenses Percent of Total Expenses
Executive Compensation $303,474
4.8%
Professional Fundraising Fees $0
Other Salaries and Wages $697,289
11.1%
Assets/Debt
Total Assets $9,566,018
Total Liabilities $0
Net Assets $9,566,018
Compensation
Key Employees and Officers Compensation Related Other
Jeana Sweeney (Chief Engagement And Gift Officer) $212,500 $0 $7,262
Amy Gray (Chief Executive Officer (Til 03/2023)) $149,038 $0 $2,346
Katherine Forsey (Chief Research Officer) $113,555 $0 $7,239
Laurel Richardson (Director Of Community Outreach) $102,375 $0 $3,774
Kimberly Magee (Director Of Finance And Admin) $99,375 $0 $3,659
Suzanne Bruhn (Chief Executive Officer (From 11/2023)) $47,307 $0 $1,749
Gilles Bouchard (Chairman) $0 $0 $0
Kevin Sami (Treasurer) $0 $0 $0
Herbert Beron (Secretary) $0 $0 $0
David Apple (Director (From Apr. 2023)) $0 $0 $0
Dan Chamby (Director) $0 $0 $0
David Coldiron (Director) $0 $0 $0
Dr Thomas Dubensky (Director) $0 $0 $0
Pete Foley (Director (Until Dec. 2023)) $0 $0 $0
Gary Gasper (Director) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
David Norcom (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director (Until Aug. 2023)) $0 $0 $0
Jonathan Pastor (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0
Dr Steven Scherer (Director) $0 $0 $0
Dr Michael Shy (Director) $0 $0 $0
Dr John Svaren (Director) $0 $0 $0
Craig Zeltsar (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$10,398,940
Expenses
$6,545,390
Net Income
$3,853,550
Net Assets
$9,861,023
Notable Sources of Revenue Percent of Total Revenue
Contributions $8,795,013
84.6%
Program Services $1,581,813
15.2%
Investment Income $16,571
0.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$673
Net Inventory Sales $0
Other Revenue $6,216
0.1%
Notable Expenses Percent of Total Expenses
Executive Compensation $376,930
5.8%
Professional Fundraising Fees $0
Other Salaries and Wages $528,146
8.1%
Assets/Debt
Total Assets $9,861,023
Total Liabilities $0
Net Assets $9,861,023
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Amy Gray (Chief Executive Officer) $269,038 $0 $9,734
Jeana Sweeney (Chief Engagement & Gift Officer) $125,538 $0 $4,476
Kimberly Magee (Director Of Finance And Administration) $94,769 $0 $3,389
Gilles Bouchard (Chairman) $0 $0 $0
Gary Gasper (Treasurer) $0 $0 $0
Herbert Beron (Secretary) $0 $0 $0
Dan Chamby (Director) $0 $0 $0
David Coldiron (Director) $0 $0 $0
Dr Thomas Dubensky (Director) $0 $0 $0
Pete Foley (Director) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
David Norcom (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Jonathan Pastor (Director) $0 $0 $0
Kevin Sami (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$5,168,679
Expenses
$4,839,059
Net Income
$329,620
Net Assets
$6,028,701
Notable Sources of Revenue Percent of Total Revenue
Contributions $5,161,270
99.9%
Program Services $0
Investment Income $9,495
0.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$2,086
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $361,776
7.5%
Professional Fundraising Fees $0
Other Salaries and Wages $364,325
7.5%
Assets/Debt
Total Assets $6,028,701
Total Liabilities $0
Net Assets $6,028,701
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Amy Gray (Chief Executive Officer) $263,267 $0 $8,953
Jeana Sweeney (Chief Engagment & Gift Officer) $111,681 $0 $4,128
Kimberly Magee (Director Of Finance) $86,272 $0 $3,284
Gilles Bouchard (Chairman) $0 $0 $0
Gary Gasper (Treasurer) $0 $0 $0
Herbert Beron (Secretary) $0 $0 $0
Dan Chamby (Director) $0 $0 $0
David Coldiron (Director) $0 $0 $0
Dr Thomas Dubensky (Director) $0 $0 $0
Laura Fava (Director) $0 $0 $0
Pete Foley (Director) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
David Norcom (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Kevin Sami (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$5,232,342
Expenses
$3,903,750
Net Income
$1,328,592
Net Assets
$5,686,656
Notable Sources of Revenue Percent of Total Revenue
Contributions $5,201,933
99.4%
Program Services $0
Investment Income $24,592
0.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$874
Net Inventory Sales $0
Other Revenue $6,691
0.1%
Notable Expenses Percent of Total Expenses
Executive Compensation $361,662
9.3%
Professional Fundraising Fees $0
Other Salaries and Wages $323,803
8.3%
Assets/Debt
Total Assets $5,686,656
Total Liabilities $0
Net Assets $5,686,656
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Amy Gray (Chief Executive Officer) $259,200 $0 $8,870
Jeana Sweeney (Director Of Development) $105,000 $0 $4,096
Kimberly Magee (Director Of Finance) $90,000 $0 $3,592
Gilles Bouchard (Chairman) $0 $0 $0
Gary Gasper (Treasurer) $0 $0 $0
Herbert Beron (Secretary) $0 $0 $0
Dan Chamby (Director (From May 2020)) $0 $0 $0
David Coldiron (Director) $0 $0 $0
Dr Thomas Dubensky (Director) $0 $0 $0
Laura Fava (Director) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
David Norcom (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Kevin Sami (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$4,754,217
Expenses
$4,066,749
Net Income
$687,468
Net Assets
$4,348,541
Notable Sources of Revenue Percent of Total Revenue
Contributions $4,695,526
98.8%
Program Services $0
Investment Income $42,833
0.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $2,501
0.1%
Net Inventory Sales $0
Other Revenue $13,357
0.3%
Notable Expenses Percent of Total Expenses
Executive Compensation $346,892
8.5%
Professional Fundraising Fees $0
Other Salaries and Wages $321,679
7.9%
Assets/Debt
Total Assets $4,348,541
Total Liabilities $0
Net Assets $4,348,541
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Amy Gray (Chief Executive Officer) $258,000 $0 $8,457
Kimberly Magee (Director Of Finance) $77,500 $0 $2,935
Gilles Bouchard (Chairman) $0 $0 $0
Gary Gasper (Treasurer) $0 $0 $0
Herbert Beron (Secretary) $0 $0 $0
David Coldiron (Director) $0 $0 $0
Dr Thomas Dubensky (Director) $0 $0 $0
Laura Fava (Director) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
David Norcom (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0
Kevin Sami (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$4,984,863
Expenses
$3,150,332
Net Income
$1,834,531
Net Assets
$3,645,409
Notable Sources of Revenue Percent of Total Revenue
Contributions $4,949,414
99.3%
Program Services $0
Investment Income $26,745
0.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $8,704
0.2%
Notable Expenses Percent of Total Expenses
Executive Compensation $338,567
10.7%
Professional Fundraising Fees $0
Other Salaries and Wages $368,891
11.7%
Assets/Debt
Total Assets $3,645,409
Total Liabilities $0
Net Assets $3,645,409
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Amy Gray (Chief Executive Officer) $250,000 $0 $8,220
Kimberly Magee (Director Of Finance) $77,500 $0 $2,929
Gilles Bouchard (Chairman) $0 $0 $0
Gary Gasper (Treasurer) $0 $0 $0
Herbert Beron (Secretary) $0 $0 $0
Dr Thomas Dubensky (Director) $0 $0 $0
Laura Fava (Director) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$3,138,829
Expenses
$2,539,687
Net Income
$599,142
Net Assets
$1,762,032
Notable Sources of Revenue Percent of Total Revenue
Contributions $2,088,880
66.5%
Program Services $494,088
15.7%
Investment Income $835
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $555,460
17.7%
Sales of Assets $0
Net Inventory Sales -$434
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $6,921
0.3%
Other Salaries and Wages $546,775
21.5%
Assets/Debt
Total Assets $1,835,763
Total Liabilities $73,731
Net Assets $1,762,032
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Amy Gray (Chief Executive Officer) $152,692 $0 $0
Kimberly Magee (Director Of Finance) $75,000 $0 $0
Herbert Beron (Secretary) $0 $0 $0
Giles Bouchard (Chairman) $0 $0 $0
Thomas Dubensky (Director) $0 $0 $0
Laura Fava (Director) $0 $0 $0
Gary Gasper (Treasurer) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
Steven O Donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$3,177,029
Expenses
$3,408,197
Net Income
-$231,168
Net Assets
$799,002
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,642,776
51.7%
Program Services $783,564
24.7%
Investment Income $695
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $749,994
23.6%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $538,425
15.8%
Professional Fundraising Fees $0
Other Salaries and Wages $316,177
9.3%
Assets/Debt
Total Assets $1,191,444
Total Liabilities $392,442
Net Assets $799,002
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Patrick Livney (Ceo) $325,000 $0 $0
Kimberly J Magee (Director Of Finance) $82,500 $0 $0
Herbert Beron (Secretary) $0 $0 $0
Stephen D Blevit (Director) $0 $0 $0
Gilles Bouchard (Chairman) $0 $0 $0
Laura Fava (Director) $0 $0 $0
Gary J Gasper (Treasurer) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0
Dr Steven Scherer (Director) $0 $0 $0
Dr Michael Shy (Director) $0 $0 $0
Dr John Svaren (Director) $0 $0 $0
Dr Peter I Warfield (Director) $0 $0 $0
Dr Lawrence Wrabitz (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$3,652,094
Expenses
$4,039,638
Net Income
-$387,544
Net Assets
$1,030,170
Notable Sources of Revenue Percent of Total Revenue
Contributions $2,297,705
62.9%
Program Services $618,370
16.9%
Investment Income $1,191
0.0%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $734,828
20.1%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $455,820
11.3%
Professional Fundraising Fees $0
Other Salaries and Wages $437,106
10.8%
Assets/Debt
Total Assets $1,546,625
Total Liabilities $516,455
Net Assets $1,030,170
Other
Provided first-class or charter travel
Compensation
Key Employees and Officers Compensation Related Other
Patrick Livney (Ceo) $325,875 $0 $0
Jeana Sweeney (Director Of Community Service) $127,712 $0 $0
Kimberly J Magee (Director Of Finance) $108,899 $0 $0
Herbert Beron (Chairman/President) $0 $0 $0
Stephen D Blevit (Director) $0 $0 $0
Gary J Gasper (Treasurer) $0 $0 $0
Alan Korowitz (Director) $0 $0 $0
Steven O'donnell (Director) $0 $0 $0
Elizabeth Ouellette (Vice Chair/Secretary) $0 $0 $0
Phyllis Sanders (Director) $0 $0 $0
William Vangelos (Director) $0 $0 $0
Dr Peter I Warfield (Director) $0 $0 $0
Stephen C Weiss (Director) $0 $0 $0
Chris Ouellette (Director) $0 $0 $0
Laura Fava (Director) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$3,153,002
Expenses
$2,798,093
Net Income
$354,909
Net Assets
$1,417,714
Notable Sources of Revenue Percent of Total Revenue
Contributions $2,361,672
74.9%
Program Services $336,617
10.7%
Investment Income $2,615
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $452,098
14.3%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $333,000
11.9%
Professional Fundraising Fees $0
Other Salaries and Wages $210,534
7.5%
Assets/Debt
Total Assets $1,707,384
Total Liabilities $289,670
Net Assets $1,417,714

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,946,570
Expenses
$1,977,106
Net Income
-$30,536
Net Assets
$1,062,805
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,114,359
57.2%
Program Services $374,949
19.3%
Investment Income $2,165
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $455,097
23.4%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $304,236
15.4%
Professional Fundraising Fees $0
Other Salaries and Wages $172,079
8.7%
Assets/Debt
Total Assets $1,073,735
Total Liabilities $10,930
Net Assets $1,062,805

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,698,730
Expenses
$1,446,000
Net Income
$252,730
Net Assets
$1,093,341
Notable Sources of Revenue Percent of Total Revenue
Contributions $896,651
52.8%
Program Services $176,833
10.4%
Investment Income $1,778
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $623,468
36.7%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $175,000
12.1%
Professional Fundraising Fees $0
Other Salaries and Wages $185,570
12.8%
Assets/Debt
Total Assets $1,106,759
Total Liabilities $13,418
Net Assets $1,093,341

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$1,651,652
Expenses
$1,212,056
Net Income
$439,596
Net Assets
$840,612
Notable Sources of Revenue Percent of Total Revenue
Contributions $1,172,843
71.0%
Program Services $141,742
8.6%
Investment Income $1,290
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $335,777
20.3%
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $247,644
20.4%
Professional Fundraising Fees $0
Other Salaries and Wages $175,644
14.5%
Assets/Debt
Total Assets $865,547
Total Liabilities $24,935
Net Assets $840,612

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 June
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 June
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 June
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 June
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 June
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 June
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

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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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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