New Contest to Raise Funds and Awareness for CMT

According to a story in Charcot-Marie-Tooth News, the CMT&Me study has launched a competition in Europe with the purpose of raising awareness and money for CMT and related disorders. Any money raised will go to either the Hereditary Neuropathy Foundation or Charcot-Marie-Tooth Association. The competition pits six countries against each other, all with the goal of having the most completed profiles on the CMT&Me app. To participate, all one has to do is update or finish their patient profile in the app.

About Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth (CMT) disease, also known as hereditary motor and sensory neuropathy, is a neurological disorder that affects the peripheral nervous system. It occurs as the result of mutations in various genes (CMT1, CMT2, CMT3), all of which result in the death of peripheral nerves. Depending on which gene is affected, this condition can be inherited in an autosomal dominant or recessive pattern. There is also an X-linked version of the disease, which is passed down through mutations of the GJB1 gene. Regardless of inheritance, affected individuals may experience foot deformities, difficulty with walking and fine motor skills, weakness in the hands and feet, and lower leg deformities. There is currently no cure for this disease, although physical and occupational therapy are used to maintain muscle strength and use. Pain medications may also be prescribed.

About the App

This app was based off Vitaccess’ MyRealWorld digital platform, as it is able to provide CMT patients with information on their condition while also learning from the profiles that patients fill out. These profiles also help patients and their healthcare providers track disease progression.

The data gathered from this app aids medical professionals in understanding the real-life experiences and obstacles that CMT patients face, which then allows them to develop the best treatments. You can learn more about the app and corresponding study here.

About the Competition

This competition is between six countries: the United States, France, Italy, Germany, Spain, and the United Kingdom. They all share one common goal: being the country with the highest ratio of profile completions per number of participants. If you live in one of these countries, you can enter by completing your patient profile. In order to do so, you can download the app on both iOS and Android devices. It is also available in numerous languages.

Not only does a completed profile help a country win the competition, but it also donates $1 to charities. These charities hold the same mission as the CMT&Me study: learning more about CMT and creating better treatments. Hopefully this competition helps to meet these goals.

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