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Health : Diseases, Disorders, and Disciplines

Charcot-Marie-Tooth Association

Seeking a cure for CMT while improving the quality of life for those affected by it

four stars

99.51

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 99.51 four stars
  Financial 99.31 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 01/08/2021 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?

The Charcot-Marie-Tooth Association (CMTA) was founded in 1983 to generate the resources to find a cure for CMT, a genetic neurological disorder that affects some 2.8 million people of all races and ethnic groups worldwide. The disease kills the long nerves to the feet and hands. As the nerves to the extremities weaken and die, the muscles around them atrophy and patients lose normal use of their feet, legs, hands and arms. In fulfillment of its mission, the CMTA funds a multifaceted research program called the Strategy to Accelerate Research, which brings together the world's leading CMT researchers to collaborate with the National Institutes of Health, universities, and pharmaceutical, biotechnology, and research service companies in partnerships that are driving progress toward treatments and cures for CMT. While the CMTA searches for a cure, it also creates awareness about this orphan disease and works to improve the quality of life of all those affected by it.



The Charcot-Marie-Tooth Association (CMTA) was founded in 1983 to generate the resources to find a cure for CMT, a genetic neurological disorder that affects some 2.8 million people of all races and ethnic groups worldwide. The disease kills the long nerves to the feet and hands. As the nerves to the extremities weaken and die, the muscles around them atrophy and patients lose normal use of their feet, legs, hands and arms. In fulfillment of its mission, the CMTA funds a multifaceted research program called the Strategy to Accelerate Research, which brings together the world's leading CMT researchers to collaborate with the National Institutes of Health, universities, and pharmaceutical, biotechnology, and research service companies in partnerships that are driving progress toward treatments and cures for CMT. While the CMTA searches for a cure, it also creates awareness about this orphan disease and works to improve the quality of life of all those affected by it.



Impact Information

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Reported Results
Showing 3 of 4
Total in 2019
Number of paid participants in conferences
331
Number of Facebook followers
44,840
Percent of expense dollars spent on Mission
87
Number of campers enrolled
89
This organization has earned a GuideStar's Platinum Seal of Transparency by voluntarily sharing the measures of progress and results they use to pursue their mission. Organizations earn Platinum Seals by selecting from a catalog of over 900 expert recognized metrics or by creating a new metric that best fits their work. This information is reported by the organization and displayed publicly on their GuideStar Nonprofit Profile. With over 1.6 million Nonprofit Profiles, 9 million annual visitors and over 200 data partners, GuideStar is the world's leading source of information about nonprofit organizations. A nonprofit itself, GuideStar is dedicated to providing better data for better decisions for a better world.
This impact information is current as of August 2020, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

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

Financial

four stars

99.31

Accountability & Transparency

four stars

100.00

This rating was published 01/08/2021 and includes data from FY2019, 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)		 87.7%
  Administrative Expenses 5.4%
  Fundraising Expenses 6.7%
  Fundraising Efficiency $0.05
  Working Capital Ratio (years) 1.33
  Program Expenses Growth 8.3%
  Liabilities to Assets < 0.1%
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) 99.51 four stars
FSHD Society (MA) 91.14 four stars
Cure SMA (IL) 87.11 three stars
Osteogenesis Imperfecta Foundation (MD) 88.11 three stars
Cystic Fibrosis Foundation (MD) 98.21 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $4,044,724
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $550,802
   Related Organizations $0
   Government Grants $100,000
Total Contributions $4,695,526
   Program Service Revenue $0
Total Primary Revenue $4,695,526
   Other Revenue $58,691
TOTAL REVENUE $4,754,217
   
EXPENSES  
   Program Expenses $3,619,020
   Administrative Expenses $219,460
   Fundraising Expenses $228,269
TOTAL FUNCTIONAL EXPENSES $4,066,749
   
Payments to Affiliates $0
Excess (or Deficit) for the year $687,468
   
Net Assets $4,348,541

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 $2,741,010 75.7%
Education and Patient Support $878,010 24.3%

Ratings History
Charcot-Marie-Tooth Association has received 2 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 01/08/2021 99.51 four stars
2018-12 12/01/2019 95.88 four stars
2017-12 12/21/2018 87.39 three stars
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, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$258,000 6.34% Amy Gray Chief Executive Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
Charcot-Marie-Tooth Association (PA) 99.51 four stars
Osteogenesis Imperfecta Foundation (MD) 88.11 three stars
Cystic Fibrosis Foundation (MD) 98.21 four stars
FSHD Society (MA) 91.14 four stars
American Brain Foundation (MN) 89.65 three 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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