CMTA or the Charcot Marie Tooth Association sole focus is to is to support the search for a cure to CMT. What is CMT? CMT is a nerve disorder that impacts 1 in ever 2500 people (wow - that's a lot!). This disorder is due to genetic problems with the nerve cells causing difficulty in transmitting signals to their muscles. CMT is not fatal - but it can severly impact the lives of people who it effects. Some people look fine while others need ankle or foot braces to walk or even require wheel chairs.
Everyday when I wake up - I take it for granted that I will be able to swimbikerun. But for those with CMT, there is an uncertainty about their future mobility and managing the fatigue which comes with the disease.
Currently there is no cure for CMT - but with the help of CMTA, everyday a cure is closer.
Below you will find several facts about CMT which are located on their website
- CMT is also known as peroneal muscular atrophy (PMA), or hereditary motor sensory neuropathy (HMSN). It is one of the most commonly inherited neurological disorders.
- CMT was discovered in 1886 by three physicians for whom it was named; Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.
- CMT is usually inherited in an autosomal dominant pattern, which means if one parent has CMT there is a 50/50 chance of each child inheriting the disorder.
- It is slowly progressive, causing deterioration of peripheral nerves, which control sensory information and muscle function of the foot/lower leg and hand/forearm.
- Depending upon the severity and type of CMT, it may cause foot-drop walking gait, foot bone abnormalities, high arches and hammer toes, loss of muscle tissue, problems with balance, problems with hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the spine) and sometimes, breathing difficulties.
- Patients may lose feeling in their hands and feet putting them at risk for blisters, burns, and sores.
- CMT has no known cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.
- It does not affect life expectancy, but can, in rare instances, cause severe disability. CMT can be detected at any age. Typically, the first signs may include leg weakness, frequent tripping and falling.
- It can vary greatly in severity, even within the same family.
- The CMTA was formed in 1983. Its mission is to generate the resources to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie-Tooth.
- The CMTA website is www.cmtausa.org.The CMTA provides patient support, public education, and promotion and funding of research.
- Mr. Patrick A. Livney serves as its Chief Executive Officer.
- The CMTA has launched an initiative, known as the Strategy to Accelerate Research™ (STAR). STAR is designed to lead to new treatments for CMT within three to five years.
- STAR researchers are able to replicate the disorder in the laboratory and in doing so, can begin testing new treatments that will ultimately lead to clinical trials in people. In addition, the translational science used in the research could have major implications for the treatment of a host of related genetic disorders, including Multiple Sclerosis, Muscular Dystrophy and ALS (Lou Gehrig's disease)
- There is a Medical Advisory Board in place, which consists of over fifty international research and medical professionals.