Soon after last year’s successful Charcot Marie Tooth (CMT) Awareness Month finished, organizers of the CMT Awareness Month 2014 began planning for the 2014 event. Through this event, the Charcot Marie Tooth Association (CMTA) educates the public and raises awareness about the neuromuscular disease Charcot Marie Tooth.

For the 2014 CMT Awareness Month, the Charcot Marie Tooth Association has arranged a month’s worth of activities. Visit the calendar on the CMTA website for information about CMT and ways to raise awareness each day during September. Suggestions for celebrating CMT Awareness Month include wearing CMT-related attire, changing your facebook avatar, ‘like’ the CMTA on facebook, sharing information about CMT with others, and volunteer and fundraise for CMT advocacy. During September, there will also be a Family and Patient Conference.

Through a letter writing campaign, advocates for CMT have been writing to state governors asking that CMT Awareness Month be recognized in their state. September has now been officially as Charcot Marie Tooth Awareness Month in a number of states. These states include Tennessee, Maryland, Nebraska, Maine and New Mexico.

The CMTA held its first-ever Charcot Marie Tooth (CMT) Awareness Month in the U.S. in September of 2011, following up on the successful Charcot Marie Tooth Awareness Week in September of 2010. Since that time, CMT Awareness month has become international, with other countries, including advocacy groups for CMT in the U.K. and Australia, also participating.

Charcot Marie Tooth (CMT), also called hereditary motor sensory neuropathy (HMSN), is the most common form of inherited peripheral neuropathy. It affects an estimated 2.6 million people worldwide. CMT causes slowly progressive deterioration in the sensory and motor nerves of the peripheral nervous system, leading to symptoms such as foot-drop, foot-bone abnormalities, balance problems, loss of some of the normal reflexes, scoliosis, muscle cramping, problems in the hands, and, more rarely, respiratory problems.

Since 1983, the non-profit Charcot Marie Tooth Association (CMTA) has supported research towards effective treatments and cures for CMT. The CMTA recently earned a four star rating from Charity Navigator, reflecting high ethical standards, accountability, and transparency in its operations.

Through STAR (Strategy to Accelerate Research), the CMTA has funded collaborative research with the goal of finding effective medical treatment for CMT. The CMTA also provides educational materials regarding CMT, such as its newsletter, CMTA Reporter. A system of CMT Support and Action Groups now reaches across the USA, helping over 7000 members. The CMTA website includes a wealth of information about CMT, and has made a system for online support groups available. The vision statement of the CMTA, “A World without CMT,” reveals the ultimate goal of the CMTA.

This year, I will be participating in CMT Awareness month. My efforts to raise awareness about Charcot Marie Tooth will include facilitating a CMT Support and Action Group with the CMTA, writing, and participating in the Awareness Month activities. I hope that you will make the effort to learn more about CMT and raise public awareness of this little know disease.

Resources:

CMTA website, (2014). 5 things you can do right now to raise CMT awareness. Retrieved from http://cmtausa.org/index.php?option=com_content&view=category&layout=blog&id=46&Itemid=213 on 8/15/14.

CMTA website, (2014). CMTA gets 4-star rating from Charity Navigator. Retrieved from http://cmtausa.org/index.php?option=com_content&view=article&id=913:cmta-gets-4-star-ranking-from-charity-navigator&catid=7:newsflash&Itemid=61 on 8/15/14.

CMTA website, (2014). Five states proclaim September CMT Awareness Month. Retrieved from http://cmtausa.org/index.php?option=com_content&view=article&id=876:five-states-proclaim-september-2014-cmt-awareness-month&catid=7:newsflash&Itemid=61 on 8/15/14.

CMTA, (2014). CMTA website. Retrieved from http://cmtausa.org on 8/15/14.

NIH/NCATS, (n.d.). Collaboration May Help Uncover Treatments for Rare Neurologic Disease. National Institutes of Health/National Center for Advancing Translational Sciences website. Retrieved from http://www.ncats.nih.gov/news-and-events/features/cmt.html on 8/15/14.