The National Charcot-Marie-Tooth Resource Center is geared up for CMT Awareness Month! This is our time to get the word out about Charcot-Marie-Tooth disease and to increase the understanding of its impact on the lives of so many. Most importantly, we engage others in our mission to support those living with CMT, to develop new treatments, and to one day find a cure.
CMT Awareness Month activities include:
Grassroots CMT Awareness
- Mission Happy Feet
The Mattheiss family is hard at work spreading awareness! Sister Kaitlyn has made a video, is busy creating happy feet bracelets, and maintains a CMT blog. The Hereditary Neuropathy Foundation will be distributing these bracelets as well.
- Carter’s Challenge
One young man with CMT plans to participate in his first bike race since receiving his diagnosis. Learn more about him on the family’s blog. We support you Carter!
- “Our Stories”
Two bloggers post daily during CMT Awareness Month about living with Charcot-Marie-Tooth: My Life With CMT and Lenkaland (offering podcasts as well!).
- Art de Cure
Gretchen Glick, founder of CMTUS, developed and curated this exhibition entirely through networking and grassroots efforts. It serves to honor all people who live with Charcot-Marie-Tooth Neuromuscular Disease and to create greater public health awareness of this inherited neuromuscular syndrome. Stepping off the usual awareness event platform, the purpose of this project is to make the Arts available to all and show how art heals body, mind and soul.
National Media CMT Awareness
- Public Service Announcements
The National CMT Resource Center is placing several ads in prominent national print media, such as New York Magazine, to increase awareness among the general public.
- AANEM Conference
The National CMT Resource Center will provide training for health care professionals at the annual meeting of the American Association of Neuromuscular and Electrodiagnostic Medicine, a premiere group of physicians, technologists, and researchers in the field of neuromuscular medicine. Our experts will be presenting a comprehensive course on Charcot-Marie-Tooth, including relevant topics such as pediatric surgery, physiotherapy/exercise/nutrition, bracing, podiatry, and research. With this multi-disciplinary group of experts, we will then host a roundtable discussion about new directions in treatment for CMT.
- Outreach to Podiatry
With CMT, it all starts with the feet. So this is where we are starting there too. We are focusing on an awareness campaign among these health care professionals. We will host a meeting of podiatrists in New York City on September 27th to engage them in our mission to increase awareness of CMT, including educating patients and their health care colleagues about the importance of podiatry care and proper footwear.
- School Outreach Program for CMT and Disabilities in General
First launched in school year 2010-11, our School Outreach Program kicks off again during Awareness Month! We offer free classroom materials and school presentations that gets kids talking about CMT and disability in general. We reached over 4000 students last year at 23 schools. This year we aim to double that!
Contact Us with Your Story about CMT Awareness Month
If you are running any CMT Awareness Month campaigns or events, please contact us. We would be happy to promote it and proud to accept any guest blog entries about your CMT Awareness campaign.