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 Amy Gray
Board Chair Gilles Bouchard
Board Chair Affiliation Livescribe
General Info
Organization DBA
DBA
CMTA
Tax Exempt Status Public Supported Charity
Incorporation Year 1986
State Charitable Solicitations Permit Yes June 2018
State Registration No 0
Financial Summary
 
 
Projected Revenue $3,224,000.00
Projected Expenses $3,223,000.00
IRS Letter of Determination
IRS Letter of DeterminationView
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

 

My history with CMT dates back to 2001, when my son Yohan was diagnosed with CMT1A. I have been involved as a volunteer advisor to the Board since 2007, when I organized the strategic retreat in Palo Alto where the STAR (Strategy to Accelerate Research) program was initially defined and launched. Like so many of us, I have been excited and delighted to see how fast the STAR program has progressed since then. Yet, with such hope comes a growing sense of responsibility to the 2.8 million people affected by CMT. This is why I agreed to join the Board of the CMTA and assume the position of chairman in March 2016.

On the professional side, most recently I was chairman and CEO for Livescribe, a venture-backed company that is the leader in the smartpen market. Previously, I was the CEO of Opnext, a maker of fiber optic components. The majority of my career (17 years) was at Hewlett-Packard, working my way up to executive vice president of Global Operations and CIO, reporting directly to CEOs Carly Fiorina and Mark Hurd. I hold an MS in engineering from UC Berkeley and an executive education degree from Harvard Business School.

I was born in France, grew up in the Alps, and love cycling, mountaineering and skiing. Yohan also introduced me to horseback riding so I am an aspiring cowboy now!

 

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.

—Amy Gray, 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.
Description The volunteer-led Sarasota Branch of the CMTA serves people living with CMT in Sarasota, Manatee, Hardee, Charlotte and De Soto counties.  The quarterly meetings help people living with a rare disease feel like they are not alone, but instead, like they are a part of a community of people sharing similar experiences.  Through these meetings, people with CMT gather to share resources, hardships and personal stories about living with CMT, thus improving their quality of life.
Budget $10,000
Category Health Care, General/Other Health Care Issues
Program Linked to Organizational Strategy Yes
Population Served People/Families with of People with Physical Disabilities Elderly and/or Disabled US& International
Short Term Success The Sarasota branch maintains a robust population of attendees, meets regularly and raises funds for the CMTA.  The participants have been connected to local and regional health care providers, giving them improved quality of care.  
Long Term Success The Sarasota branch has maintained its branch for four consecutive years, which ensures the attendees continue to connect with and receive improved quality of care.
Program Success Monitoring Local CMT community members have been introduced to high-quality health care providers who specialize in CMT, thus improving the quality of life for the patient.  CMT community members have reported a more optimistic outlook on life with CMT as they meet local health care providers who are interested in CMT, hear coping strategies from peers and elders and experience a sense of belonging that is otherwise unavailable to those living with CMT.  
Program Success Examples
Tom D. has lived with the symptoms of CMT since his early 20s.  For years he has tried to find strategies to enhance is quality of life with a progressive disabling disease.  He worked with many physical therapists and orthotists who applied their basic education in anatomy to Tom's CMT, without truly understanding the pathology of CMT.  The strategies given to Tom repeatedly failed, and he was left frustrated by the lack of knowledge and care specific to CMT.  
 
Once Tom connected with the volunteer-led Sarasota branch of the CMTA, he met others with similar frustrations.  He also was referred to a physical therapist who had an understanding of CMT and experience working with people living with CMT.  Tom was also connected to an orthotist who had deep knowledge of the pathology and progression of CMT, thus making a set of leg braces for him that not only improved his physical abilities, but also staves off some of the symptoms and contractures of CMT.  
 
Tom feels re-energized to follow his passion for sailing now that he can more confidently balance and move. Not only did the Sarasota branch make Tom feel like he had comrades suffering similarly, but he also connected to health care providers who significantly improved his quality of life, and outlook on life with CMT. 
CEO/Executive Director
CEO/Executive Director Amy Gray
CEO Term Start May 2017
CEO/Executive Director Email agray@cmtausa.org
Experience The CMTA Board of Directors announced May 15 the appointment of Amy J. Gray as the new chief executive officer of the Charcot-Marie-Tooth Association. “We are delighted to bring Amy on board as our new CEO,” said CMTA Board Chair Gilles Bouchard. “With her extensive experience, proven leadership and passion for our mission, Amy will help us accelerate the momentum in our fight against CMT.”

Gray brings to her new position more than 17 years of management experience in national voluntary health agencies, combined with a strong understanding of mission-driven organizations. Her experiences working for three major non-profit health care organizations have shaped her expertise in fundraising, staff development, financial and operational management, strategic planning and community engagement.

Gray was most recently the senior vice president of constituent and community relations for the National Parkinson Foundation (NPF), responsible for providing the overall leadership, strategy and vision for the foundation’s fundraising efforts, planned giving legacy society and network of chapters. She joined the NPF in 2013 in the role of vice president of chapter relations and community partnerships, providing guidance to its nationwide network of affiliates in organizational, mission, board and fund development activities. In 2014, she led the foundation and its affiliate chapters through a process of unification, integrating the chapters and foundation into one organization.

Before joining the NPF, Gray served in executive roles at the Crohn’s and Colitis Foundation of America and the Muscular Dystrophy Association. In these roles, she successfully built strong chapters and robust relationships with donors, volunteer leaders and key stakeholders.

Gray is a graduate of St. Cloud State University and lives in South Florida with her husband and children.

Former CEOs/Executive Directors
NameTerm
Mr. David Hall Jan 2009 - Oct 2011
Patrick Livney Nov 2010 - Dec 2016
Senior Staff
NameTitle
Mrs. Kimberly J. Magee Director of Finance
Staff & Volunteer Statistics
Full Time Staff 6
Part Time Staff 0
Staff Retention Rate % 100
Professional Development Yes
Contractors 1
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.   
Affiliations
AffiliationYear
National Organization for Rare Disorders - Member0
Independent Charities of America0
AFP (Association of Fundraising Professionals)0
External Assessments and Accreditations
Assessment/AccreditationYear
Charity Navigator0
Awards & Recognition
Award/RecognitionOrganizationYear
Best in AmericaIndependent Charities of America2016
Best in AmericaIndependent Charities of America2015
Best in AmericaIndependent Charities of America2014
Risk Management Provisions
Government Licenses
Organization Licensed by the Government No
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 Yes
Document Destruction Policy Yes
Directors and Officers Insurance Policy
Policies and Procedures Under Development
Board Chair
Board Chair Gilles Bouchard
Company Affiliation Livescribe
Board Term Mar 2016 to Mar 2019
Board Chair Email gibouchard@gmail.com
Board Members
Board Members
NameAffiliation
Mr. Herb Beron Morgan Stanley
Mr. Steve Blevitt Sidley Austin LLP
Mr. Gilles Bouchard Livescribe
Mr. Tom Dubensky Aduro
Ms. Laura Fava Community Volunteer
Mr. Gary Gasper Ernst & Young
Mr. Alan Korowitz Clear Channel
Mr. Steven O'Donnell S & J Elkridge Enterprises LLC
Mr. Christopher Ouellette Community Volunteer
Ms. Elizabeth Ouellette Community Volunteer
Mr. Phyllis Sanders Baker Sanders LLC
Dr. Steve Scherer Community Volunteer
Dr. John Svaren Community Volunteer
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 13
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Gender
Male 10
Female 3
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 99
Board Orientation Yes
Number of Full Board Meetings Annually 11
Board Meeting Attendance % 73
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
Standing Committees
Advisory Board / Advisory Council
Finance
Fiscal Year Projections
Fiscal Year Begins 2017
Fiscal Year Ends 2017
Projected Revenue $3,224,000.00
Projected Expenses $3,223,000.00
Total Projected Revenue includes "in-kind" contributions/ donations No
Organization has Endowment No
Endowment Spending Policy N/A
Capital Campaign
Currently In a Capital Campaign No
Anticipate Campaign within 5 years? No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
IRS Form 990s
9902016
9902015
9902014
9902013
990 20122012
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 Year201620152014
Foundation and
Corporation Contributions
$0$0$0
Government Contributions$0$0$0
Federal$0$0$0
State$0$0$0
Local$0$0$0
Unspecified$0$0$0
Individual Contributions$1,564,773$2,210,555$2,363,470
$0$0$0
$783,564$618,370$334,819
Investment Income, Net of Losses$695$1,191$2,615
Membership Dues$78,003$87,150$0
Special Events$749,994$734,828$452,098
Revenue In-Kind$0$0$0
Other$0$0$0
Expense Allocation
Fiscal Year201620152014
Program Expense$2,847,702$3,299,104$2,386,232
Administration Expense$241,257$107,300$80,061
Fundraising Expense$319,238$633,234$331,800
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses0.930.901.13
Program Expense/Total Expenses84%82%85%
Fundraising Expense/Contributed Revenue14%21%12%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$1,191,444$1,546,625$1,707,384
Current Assets$1,171,970$1,515,293$1,699,923
Long-Term Liabilities$0$0$0
Current Liabilities$392,442$516,455$289,670
Total Net Assets$799,002$1,030,170$1,417,714
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar AmountContributions, gifts, grants $1,564,773Contributions, gifts, grants $2,210,555Contributions, gifts, grants $2,363,470
Second Highest Funding Source & Dollar AmountSupport Group Revenue $783,564Fundraising $734,828Fundraising $452,098
Third Highest Funding Source & Dollar AmountFundraising $749,994Support Group Revenue $618,370Program Service Revenue $334,819
CEO/Executive Director Compensation N/A
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities2.992.935.87
Long Term Solvency
Fiscal Year201620152014
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 19036
Phone 610 499-9264 105

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.