Nonprofit Encourages Charcot-Marie-Tooth Disease Patients to Stay Active

According to a story from Charcot-Marie-Tooth News, a new nonprofit organization called Shark Tooth Cycling has recently begun operations. The mission of the organization is to encourage young people in the US to get outside and ride their bikes, especially those living with Charcot-Marie-Tooth disease (CMT). Through its activities, Shark Tooth aims to uplift these patients and foster greater awareness surrounding the disease.

About Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth disease is a hereditary disorder of the peripheral nervous system. It is most characterized by a progressive loss of touch sensation and muscle tissue in several different parts of the body. The cause of this disease is usually linked to a genetic mutation, but the mutation involved varies depending on the variant of Charcot-Marie-Tooth disease. There are multiple types of Charcot-Marie-Tooth disease, with all types aside from type 2 having a demyelinization effect. Type 2 causes damage to the neuronal axon instead. Symptoms include foot drop, muscle wasting (typically in the arms, legs, and hands), painful muscle spasms, loss of sensation in the limbs, scoliosis, trouble speaking, chewing, swallowing, and tremors. Treatment typically includes therapy and surgery in order to maintain function. There is no cure. The disease can occur early in life or as late as the 30s and 40s. To learn more about Charcot-Marie-Tooth disease, click here.

About Shark Tooth Cycling

Shark Tooth is similar to other disease-based cycling groups, such as Team Type 1, which is focused on diabetes. Shark Tooth aims to support athletes, participate in fundraisers and races, and sponsor development teams.

“We are here to not only ride with you, but to inspire you, and work with everyone we can through a shared passion for cycling and the outdoors to raise funds and awareness for CMT.” – Chris “Topher” Delamarter, Shark Tooth Cycling founder and director

Delamarter’s desire to establish a cycling group focused on Charcot-Marie-Tooth disease comes from personal experience, as he was first diagnosed at age ten. He found that cycling helped him regain mobility and a sense of freedom as walking became more of a challenge. 

While the pandemic means that Shark Tooth won’t be doing any events yet this year, the group hopes to start their first in-person activities some time in 2021.

Learn more about Shark Tooth Cycling here.

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