Member Spotlight: Charcot-Marie-Tooth Association

By: Kelly Garrity, Senior Director, Membership Services and Development

The Charcot-Marie-Tooth Association (CMTA) is the leading patient advocacy organization supporting research to develop treatments for patients and programs to help improve the quality of life of everyone living with CMT. CMT is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States. Over 90 genes have been identified to cause CMT and there are probably another 40 to 50 genes that have not been identified yet.

CMTA’s mission is to support the development of new drugs to treat CMT, to improve the quality of life for those with CMT, and to ultimately find a cure. The CMTA currently works with more than 70,000 patients and families, friends, and medical professionals to further its mission, which is driven by collaboration and partnership with the community.

The CMTA’s greatest successes have been in accomplishing its twofold goals of supporting, encouraging, and funding CMT research and providing information and education to its members through conferences, newsletters, publications, and branches. Since its founding, the CMTA has made incredible advances in CMT research and knowledge.

The CMTA’s research program was put into high-gear in 2008 when the organization launched its Strategy to Accelerate Research (STAR). The premise behind STAR is simple, bring the top CMT researchers and scientists together with pharmaceutical, biotech companies, and patients, to accelerate treatments for the community. Since its inception, the CMTA has funded more than $10 million is STAR projects and has plans to fund another $10 million in the coming years. The CMTA is actively funding more than 50 projects, including work with more than 20 pharmaceutical and biotechnology companies.

To provide patient education and support, the CMTA publishes a quarterly newsletter, The CMTA Report, to provide research information to its readers and to provide patients with the knowledge and understanding to deal effectively with the disease. Additionally, there are approximately 75 branches across the country that provide meeting points for patients to interact and provide support for one another.

The CMTA is proud to be a member of the NHC and enjoys working collaboratively with the other non-profit health organization members on advocacy issues for the community.
For more information on becoming an NHC member, email me.