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Health : Diseases, Disorders, and Disciplines

Charcot-Marie-Tooth Association

Improving the quality of life for those affected by Charcot-Marie-Tooth

three stars

85.49

P.O. Box 105 Glenolden, PA 19036
tel: (800) 606-2682   Web Site
EIN: 22-2480896

Board Leadership
Gilles Bouchard
President

CEO
Amy Gray
CEO

 
 
  Score
(out of 100) 		Rating
Overall Score & Rating 85.49 three stars
  Financial 79.48 two stars
  Accountability & Transparency 100.00 four stars
This rating was published 03/01/2018 and includes data from FY2016, the most recent 990 received at that time.
Why isn't this based on more recent data?

Founded in 1983, the Charcot-Marie-Tooth Association's (CMTA) goals are patient support, public education, promotion of research and ultimately the treatment and cure of Charcot-Marie-Tooth (CMT). CMT is the most commonly inherited neurological disorder and is found world-wide in all races and ethnic groups. CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Our mission is to generate the resources to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie-Tooth.

Founded in 1983, the Charcot-Marie-Tooth Association's (CMTA) goals are patient support, public education, promotion of research and ultimately the treatment and cure of Charcot-Marie-Tooth (CMT). CMT is the most commonly inherited neurological disorder and is found world-wide in all races and ethnic groups. CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Our mission is to generate the resources to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie-Tooth.

Learn more about how we calculate the overall score and rating.

Financial

two stars

79.48

Accountability & Transparency

four stars

100.00

This rating was published 03/01/2018 and includes data from FY2016, the most recent 990 received at that time.
Why isn't this based on more recent data?
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)		 83.2%
  Administrative Expenses 4.1%
  Fundraising Expenses 12.5%
  Fundraising Efficiency $0.20
  Working Capital Ratio (years) 0.23
  Program Expenses Growth 20.6%
  Liabilities to Assets 32.9%
All data for Financial Performance Metrics calculations was provided by Charcot-Marie-Tooth Association on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Charcot-Marie-Tooth Association on recent 990s filed with the IRS.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Highly Rated

Charity Name & State Overall Score Overall Rating
Charcot-Marie-Tooth Association (PA) 85.49 three stars
Aplastic Anemia & MDS International Foundation (MD) 91.45 four stars
Epilepsy Foundation of Minnesota (MN) 90.38 four stars
Osteogenesis Imperfecta Foundation (MD) 93.31 four stars
Can Do Multiple Sclerosis (CO) 97.29 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,564,773
   Federated Campaigns $0
   Membership Dues $78,003
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $1,642,776
   Program Service Revenue $783,564
Total Primary Revenue $2,426,340
   Other Revenue $750,689
TOTAL REVENUE $3,177,029
   
EXPENSES  
   Program Expenses $2,847,702
   Administrative Expenses $241,257
   Fundraising Expenses $319,238
TOTAL FUNCTIONAL EXPENSES $3,408,197
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-231,168
   
Net Assets $799,002

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research Fellowships & Grants $1,724,733 60.6%
Education and Patient Support $180,656 6.3%
Bi-Monthly Newsletter $118,413 4.2%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2016-12 03/01/2018 85.49 three stars
2015-12 02/01/2017 87.18 three stars
2014-12 06/01/2016 90.67 four stars
 
CN 2.0
2014-12 11/01/2015 91.94 four stars
2013-12 08/01/2014 91.65 four stars
2012-12 10/01/2013 87.02 three stars
2011-12 09/01/2012 79.81 two stars
2011-12 08/01/2012 79.61 two stars
2010-12 12/23/2011 63.98 one star
2009-12 09/20/2011 69.94 one star
 
CN 1.0
2009-12 03/01/2011 68.93 one star
2008-12 12/01/2009 92.65 four stars
2007-06 05/01/2008 80.35 three stars
2006-06 05/01/2007 83.92 three stars
2005-06 02/01/2007 79.13 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 22-2480896
Name in IRS Master File CHARCOT-MARIE-TOOTH ASSOCIATION
NTEE Code G8X
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (161) Scientific research (diseases)
(125) Giving information or opinion (see also Advocacy)
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date June, 1986
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)		 (Log In or Register Now to View Forms 990!)
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
  • December, 2012

The data displayed in this profile is provided by the IRS for free in the form of Publication 78 and the Business Master File (BMF).

Compensation % of Expenses Paid to Title
$325,000 9.53% Patrick Livney CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
Charcot-Marie-Tooth Association (PA) 85.49 three stars
Friedreich's Ataxia Research Alliance (PA) 98.23 four stars
Osteogenesis Imperfecta Foundation (MD) 93.31 four stars
Restless Legs Syndrome Foundation (TX) 91.16 four stars
Aplastic Anemia & MDS International Foundation (MD) 91.45 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Charcot-Marie-Tooth Association
P.O. Box 105
Glenolden, PA 19036
tel: (800) 606-2682
fax: (610) 499-9267
EIN: 22-2480896

Visit Web Site

Board Leadership

Gilles Bouchard
President

CEO

Amy Gray
CEO

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