The Charcot-Marie-Tooth Association
P O Box 105
Glenolden PA 19036
Mission
To support the development of new drugs to treat CMT (the most commonly inherited peripheral neuropathy); to improve the quality of life for people with CMT and ultimately, to find a cure for CMT.
Leadership
CEO/Executive Director Patrick Livney
Board Chair Herb Beron
Board Chair Affiliation Morgan Stanley Wealth Management
General Info
Organization DBA
DBA
CMTA
Tax Exempt Status Public Supported Charity
Incorporation Year 1986
State Charitable Solicitations Permit Yes June 2017
State Registration No 0
IRS Letter of Determination
View
Financial Summary
 
 
Projected Revenue $4,000,000.00
Projected Expenses $2,900,000.00
Impact Statement
  • The CMTA's STAR research program has identified several compounds with the potential to become effective therapies for the most common type of CMT.
  • The CMTA has established additional "CMT Centers of Excellence" around the county where patients can be examined and treated in multidisciplinary clinics.
  • The CMTA has established additional branches to act as support groups for people with CMT. 
  • The CMTA will continue to support research to find treatments and, ultimately, a cure for CMT while providing support to improve the quality of life for people with CMT. 
Needs Statement
  1. Funds for the STAR (Strategy to Accelerate Research) to find a treatment and, ultimately, a cure for CMT.  The Sarasota, FL CMTA Branch has helped raise almost $15,000 toward the needed $ 1.9 million.
  2. Funds to  support to the CMTA Branches that act as support groups for people with CMT.  $57,000
  3. Funds for the informational newsletter that is sent to members $35,000
  4. Funds for the Patient/Family Conferences to provide the latest information to people with CMT $80,000
  5. Funds to support the research meetings of international scientists.  $50,000
Background Statement
Founded in 1983, the CMTA is a 501(c)(3) nonprofit organization with a mission to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure for CMT. The CMTA is governed by a voluntary Board of Directors, and its Scientific Advisory Board and STAR team is an international group of more than CMT clinical and research experts. The CMTA has earned a four-star rating by Charity Navigator and has been awarded the Independent Charities Seal of Excellence by the Independent Charities of America, an award given to organizations that annually meet the highest standards of public accountability, program performance, and cost-effectiveness.  With more than 25,000 CMT patients and families, medical professionals, and supportive friends in its database, the CMTA is the only national organization devoted solely to improving the lives of everyone affected by CMT.
Areas Served
Areas Served
Area
Throughout the United States
Areas Served Comments THE CMTA reaches over 30,000 of the 150,000 Americans living with CMT with a global reach through our website and social media channels. The CMTA sponsors more than 80 CMTA Branches in North America, including Canada and Mexico.  The local branch is the Sarasota, FL CMTA Branch.
Service Categories
Primary Org Type Medical Research
Secondary Org Type Diseases Disorders & Medical Disciplines
Tertiary Org Type
Statement from the Board Chair/Board President

When our daughter Julia was diagnosed with CMT 2E, my wife and I decided that we needed to become actively involved with the CMTA.

I've been a member of the Board of Directors since 2008 and currently the Chairman since November 2011. I welcome the opportunity and challenge to lead the Board in taking the CMTA to even greater heights. Our organization has accomplished much in the past eight years (through dramatic expansion of the CMTA Branch network and awareness campaigns, and tremendous progress with NIH and the pharmaceutical industry in our research initiatives).

That being said, there is still much more work to do. I’m hopeful that we can build on the momentum that we’ve generated in the past eight years and take the CMTA to an entirely new level. I look forward to meeting leaders and members at meetings and patient/family conferences throughout the country, and working closely with CEO Patrick Livney to raise research dollars to further our goal of finding a cure!

It is my heartfelt goal that the CMTA achieve its stated mission: “to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie Tooth.”

Statement from the CEO/Executive Director

At the CMTA, our vision is a world without CMT. We’re working hard every day to achieve that vision, and STAR is closing in on pharmacological treatments for CMT. But we’re not just pushing the research forward. We’re also working tirelessly to raise awareness and to improve the quality of life for all those affected by CMT. It’s personal for us: Our board, our staff and our volunteers have all been touched by CMT. Before skipping ahead to learn more about STAR and how you can invest in a world without CMT, I hope you’ll take a moment to meet us and find out what we’re doing to make a difference in people’s lives every day.

—Patrick A. Livney, CEO

Programs
Description Patient/Family Conferences, held in cities around the U.S., provide the latest information and an opportunity to meet and share the challenges and resources for people living with CMT.
Budget $80,000
Category Diseases, Disorders & Medical Disciplines, General/Other Birth Defects, Genetic Disorders & Developmental Disorders
Program Linked to Organizational Strategy Yes
Population Served People/Families with of People with Physical Disabilities People/Families of People with Health Conditions Other Health/Disability
Short Term Success People with CMT learned about the latest developments in research and in resources for dealing with their CMT.
Long Term Success More people were able to learn about CMT and the research that is being done to find a treatment and, ultimately, a cure for CMT and the resources to deal with CMT in the meantime.
Program Success Monitoring In the CMTA Report, the newsletter, articles have reported the positive responses and noted some of the things they have learned from Patient/Family Conference attendees.
Program Success Examples More people have attended Patient/Family Conferences than previously and noted their appreciation for the information that they have gained from listening to the experts in CMT.
Description The CMTA launched the Strategy to Accelerate Research (STAR) in 2008. Working with the preeminent researchers, clinicians and institutions with the inherited neuropathy community, the CMTA is leading the advancement of CMT research to find a treatment and, ultimately, a cure for the almost 3 million people with CMT.  
Budget $1,900,000
Category Diseases, Disorders & Medical Disciplines, General/Other
Program Linked to Organizational Strategy Yes
Population Served People/Families of People with Health Conditions
Short Term Success In just a short time STAR has found several potential compounds to treat CMT.
Long Term Success STAR continues its pursuit of a treatment and, ultimately a cure for CMT.
Program Success Monitoring Scientists, clinicians, and others working on STAR provide updates on the research being conducted and meet at international conferences to report and share their research.
Program Success Examples The CMTA now has several assays and potential compounds that we hope will lead to a treatment and, ultimately, a cure for CMT.
CEO/Executive Director
CEO/Executive Director Patrick Livney
CEO Term Start Oct 2011
CEO/Executive Director Email pal@cmtausa.org
Former CEOs/Executive Directors
NameTerm
Mr. Charles Hagins May 2002 - July 2010
Mr. David Hall Jan 2009 - Oct 2011
Senior Staff
NameTitle
Mrs. Kimberly J. Magee Director of Finance
Staff & Volunteer Statistics
Full Time Staff 7
Part Time Staff 1
Staff Retention Rate % 100
Professional Development Yes
Contractors 0
Volunteers 80
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation Yes
Senior Management Formal Evaluation Yes
Non-Management Formal Evaluation Yes
Collaborations
The CMTA has numerous collaborations with an interest in drug development.  We collaborate with the National Institutes of Health, Sanofi, Pfizer, Affectis, Addex, and Psychogenics.  We have research collaborations with scientists at numerous academic institutions including University of Miami, University of Wisconsin, University of Pennsylvania, University of Iowa, Cedars-Sinai and others.   
External Assessments and Accreditations
Assessment/AccreditationYear
Awards & Recognition
Award/RecognitionOrganizationYear
Four Star ratingCharity Navigator2015
Four Star ratingCharity Navigator2014
Best in AmericaIndependent Charities of America2015
Best in AmericaIndependent Charities of America2014
Risk Management Provisions
Plans
Fundraising Plan No
Communication Plan No
Strategic Plan Under Development
Strategic Plan Years
Strategic Plan Adopted 0
Management Succession Plan No
Continuity of Operations Plan No
Policies
Nondiscrimination Policy Under Development
Whistle Blower Policy No
Document Destruction Policy No
Directors and Officers Insurance Policy
Policies and Procedures Under Development
Board Chair
Board Chair Herb Beron
Company Affiliation Morgan Stanley Wealth Management
Board Term Nov 2013 to Dec 2016
Board Chair Email herbert.a.beron@morganstanley.com
Board Members
Board Members
NameAffiliation
Mr. Herb Beron Morgan Stanley
Ms. Laura Fava Community Volunteer
Mr. Gary Gasper Ernst & Young
Mr. Alan Korowitz Clear Channel
Mr. Steven O'Donnell S & J Elkridge Enterprises LLC
Ms. Elizabeth Ouellette Community Volunteer
Mr. Christopher Ouellette Community Volunteer
Mr. Phyllis Sanders Baker Sanders LLC
Dr. Steve Scherer Community Volunteer
Dr. John Svaren Community Volunteer
Dr. Peter Warfield Community Volunteer
Mr. Steven Weiss Community Volunteer
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 12
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Gender
Male 9
Female 3
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 99
Board Orientation Yes
Number of Full Board Meetings Annually 12
Board Meeting Attendance % 67
Board Self-Evaluation Yes
Written Board Selection Criteria No
Board Conflict of Interest Policy Yes
% of Board Making Monetary Contributions 100
% of Board Making In-Kind Contributions 58
Fiscal Year Projections
Fiscal Year Begins 2016
Fiscal Year Ends 2016
Projected Revenue $4,000,000.00
Projected Expenses $2,900,000.00
Organization has Endowment No
Endowment Spending Policy N/A
Capital Campaign
In a Capital Campaign No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
IRS Form 990s
9902014
9902013
990 20122012
Audit/Financial Documents
Historical Financial Review
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201420132012
Foundation and
Corporation Contributions
$0$1,064,965$844,491
Government Contributions$0$0$0
Federal$0----
State$0----
Local$0----
Unspecified$0$0$0
Individual Contributions$2,363,470----
$0$0$0
$334,819$374,949$176,833
Investment Income, Net of Losses$2,615$2,165$1,778
Membership Dues$0$49,394$52,160
Special Events$452,098$0$0
Revenue In-Kind$0$0$0
Other$0$0$0
Expense Allocation
Fiscal Year201420132012
Program Expense$2,386,232$1,621,532$1,028,984
Administration Expense$80,061$99,299$221,036
Fundraising Expense$331,800$256,275$195,980
Payments to Affiliates$0----
Total Revenue/Total Expenses1.130.981.17
Program Expense/Total Expenses85%82%71%
Fundraising Expense/Contributed Revenue12%24%23%
Assets and Liabilities
Fiscal Year201420132012
Total Assets$1,707,384$1,073,735$1,106,759
Current Assets$1,699,923$1,071,163$1,066,049
Long-Term Liabilities$0$0$0
Current Liabilities$289,670$10,930$13,418
Total Net Assets$1,417,714$1,062,805$1,093,341
Top Funding Sources
Fiscal Year201420132012
Top Funding Source & Dollar AmountContributions, gifts, grants $2,363,470 -- --
Second Highest Funding Source & Dollar AmountFundraising $452,098 -- --
Third Highest Funding Source & Dollar AmountProgram Service Revenue $334,819 -- --
CEO/Executive Director Compensation $200,001 - Plus
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201420132012
Current Ratio: Current Assets/Current Liabilities5.8798.0079.45
Long Term Solvency
Fiscal Year201420132012
Long-Term Liabilities/Total Assets0%0%0%
Financials Comments
Financial Comments by Foundation 990s and financials are for the national organization, as the organization does not have these separate for the local chapter.
Nonprofit The Charcot-Marie-Tooth Association
Address P O Box 105
Glenolden, PA 60603
Phone 610 499-9264

THE COMMUNITY FOUNDATION OF SARASOTA COUNTY, INC. IS A REGISTERED 501(C)(3) NON-PROFIT CORPORATION. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP-FLA) OR FROM THE WEBSITE: WWW.FRESHFROMFLORIDA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. ONE HUNDRED PERCENT (100%) OF EACH CONTRIBUTION IS RECEIVED BY THE COMMUNITY FOUNDATION OF SARASOTA COUNTY. REGISTRATION #SC-02471.