September is Charcot-Marie-Tooth Disease Awareness Month: Spreading Rare Disease Awareness

September is recognized as Charcot-Marie-Tooth disease (CMT) Awareness Month. Although this illness is one of the most widespread inherited genetic disorders, there is still a significant need to spread awareness among the medical community and the general public. Organized by the Charcot-Marie-Tooth Association (CMTA), a nonprofit group, the focus of this year’s event is on CMTA champions, who are being recognized for their contributions to the Charcot-Marie-Tooth disease community.

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 demyelination 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.

Are you ready to become a CMTA champion? All it takes is completing a series of challenges during the month of September that will help you get involved in spreading awareness about this rare disease.

  1. Deck out your profile for CMT Awareness by adding a frame to your profile picture and changing your cover photo.
  2. Download this “What is CMT?” graphic and share it over email or on social media. 
  3. Spread awareness where it counts by sending this “What is CMT” brochure to your own doctor and other care providers in your local area.
  4. Take awareness to the national level by sending this pre-written letter about CMT to Dr. Sanjay Gupta, who is the CNN chief medical correspondent.
  5. Participate in the ‘Bare Your Brace’ decorating contest.
  6. Submit a story about your own personal CMT champion. Email the story to [email protected] by Saturday, September 26th. 
  7. Share this Thank You graphic on your social media and make sure to tag the “champions” in your own life that cheer you on and inspire you.

To learn more about how to get involved in CMT Awareness Month, click here.

Follow us