According to a story from Charcot-Marie-Tooth News, the nonprofit organization CMT Australia, which focuses on serving the Charcot-Marie-Tooth disease patient community in Australia, has recently acquired a grant to the tune of $10,000 that will go towards CMT Aussie Kids, which is the group’s youth program. The grant was given by the Commonwealth Bank, which awards grants to various community organizations. While COVID-19 restrictions means that youth activities are at a minimum for now, the money will be put to use once these are lifted.

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 CMT Aussie Kids

CMT Aussie Kids has been an active part of CMT Australia for the past decade. The program is primarily meant as a way for children impacted by Charcot-Marie-Tooth disease to meet one another, socialize, and spend time together doing a variety of activities, which vary depending their development and disease state. Having a rare diagnosis can be an isolating feeling, and this program serves to remind young patients that they are not alone in their struggles and challenges.

The program includes a summer camp for patients aged ten years or more as well as other activities throughout the year that are geared towards younger patients. CMT Australia is looking forward to getting these plans up and running again in a responsible manner once COVID-related restrictions have been lifted.

To learn more about the activities of CMT Australia, click here.