The National Foundation for Peroneal Muscular Atrophy (NFPMA) was incorporated in 1983 in Pennsylvania as a 501(c)(3) federally recognized charity. The original founder, Dr. Howard Shapiro, was himself, a patient with CMT and when he began the organization. He hoped to create interest in the disorder within the medical community while also providing support to patients and families dealing with the little-known problem. From its inception, the NFPMA, now the CMTA has continued that twofold concern by supporting research on the causes and possible cures for CMT and by focusing on patient education and support.
Providing CMT branches is another important way in which the association serves its members. Branches are run by caring individuals who provide other CMT patients in their general area a means by which they can interact with others dealing with the same problems and listen to specialists who discuss topics such as surgeries, physical therapy, shoe fitting and bracing. Branches are currently located in approximately 15 different areas of the country.
The CMTA is run by a Board of volunteers who establish policy and procedures and who are hands-on in spearheading fundraising activities such as golf tournaments and “swims for the cure.” They generate hundreds of thousands of dollars for the CMTA each year.
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. From an organization of only a few hundred persons, the association has grown to be known throughout the medical world and to serve over 20,000 persons who make inquiries through the Internet, by phone calls and with letters asking for our information and publications. The first twenty-seven years have been marked by incredible advances in CMT research and knowledge.Read More»