The Charcot-Marie-Tooth Association kicks off CMT Awareness Month 2022 on Sept. 1, marking the beginning of four weeks of rock and roll-themed activities aimed at educating the public about this rare disease.
CMT is one of the most commonly inherited peripheral neuropathies, affecting the long nerves that go to the feet and hands of one in 2,500 people worldwide. As the nerves die, the muscles around them wither. Despite its prevalence, it’s often misdiagnosed or not diagnosed at all. Because early intervention can help avoid some of the deformities associated with the disease, raising awareness is imperative.
The CMTA is a patient-led nonprofit that is aggressively searching out a treatment for CMT by putting together a group of top-flight researchers and experts and directly funding their work. The CMTA also offers a variety of educational materials and conferences, coordinates branches in North America, provides physician referrals and works closely with the clinical and research communities.
CMT Awareness Week was born in September 2010, as the CMTA community began to educate others about CMT. Over the years, one special week morphed into a full month of special activities, from interactive webinars to in-person Walks 4 CMT.
With the theme “Rock and Roll into a World Without CMT,” Awareness Month 2022 celebrates the rockstars in the CMT community, including CMT patients, families, advocates, clinicians and researchers. Community members and members of the public are invited to participate in fun social and digital challenges and activities, like the TikTok and Instagram Rockstar challenge. Participants are encouraged to attempt to play an instrument with oven mitts or socks on their hands to demonstrate the difficulties community members have with fine motor skills, then post videos and challenge others to do the same.
Participants are also invited to honor the CMT rockstars in their lives by nominating them to the CMTA’s virtual Hall of Fame. A $5 donation gets their names on a virtual record.
Help us educate your friends and family by tagging them in your social media posts to try to complete the challenge next! Each week during awareness month, we will pose a new musical challenge and see how many musicians can play the song.
To learn more, please visit the CMTA Awareness Month 2022 toolkit.