Organizers of the CMT Awareness Month 2012 have been planning for months. Through this event, the Charcot Marie Tooth Association (CMTA) plans to educate the public and raise awareness about Charcot Marie Tooth (CMT). Events include National Support Group Awareness Day, which has been scheduled for September 15, 2012, and Global Awareness Day, which will be celebrated around the world on September 28, 2012.
Organizers plan to use the internet to spread awareness, as well. There will be an avatar available for facebook users for the month of September. The CMTA will again host a special website for CMT Awareness Month 2012, and hope that many will visit and sign the signature wall.
The CMTA has been taking nominations for their 2nd Annual Charcot Marie Tooth Association “I’m a Star!” and “I’m a Shooting Star!” contests, and will be announcing the winners. Other awareness initiatives include two separate letter writing campaigns to have CMT featured on the television show The Doctors, and to have September officially proclaimed as Charcot-Marie-Tooth Awareness Month in the U.S.A.
This year, the CMTA has also made Awareness Month items available to order. Items include posters, bracelets, brochures, T-shirts, hats, key-chains, and mugs. These can be purchased through Zazzle (see Resources). A portion of the proceeds from the sale of these items benefits the CMTA.
Last year, the CMTA held its first-ever Charcot Marie Tooth (CMT) Awareness Month in September. According to an article in the CMTA Reporter (2011), the 2011 Awareness was highly successful, with people from over 80 countries participating, the CMTA Awareness Month messages reaching 130,000, people, and high internet visibility, with over 175,000 page views of the Awareness Month site and 29,000 video views on the CMTA YouTube channel. Last year’s Awareness Month followed up on the successful Charcot Marie Tooth Awareness Week in September of 2010.
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. Through STAR (Strategy to Accelerate Research), the CMTA has funded collaborative research with the goal of finding effective medical treatment for CMT (NIH/NCATS, n.d.). The CMTA also provides educational materials regarding CMT, including its bi-monthly newletter the CMTA Reporter, and has developed a system of CMT Support and Action Groups across the USA. 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 involved in educating the public about Charcot Marie Tooth through my involvement with the CMTA as a CMT Support and Action Group facilitator, and through writing, public speaking, and fundraising. I hope that you will make the effort to learn more about CMT, and to educate others about this little know disease.
CMTA, (2011). CMT Awareness Month website. http://www.wearethecmta.com . Retrieved 8/22/12.
CMTA, (2010). CMTA website home. http://www.cmtausa.org/index.php . Retrieved 8/22/12.
NIH/NCATS, (n.d.). Collaboration May Help Uncover Treatments for Rare Neurologic Disease. National Institutes of Health/National Center for Advancing Translational Sciences website. http://www.ncats.nih.gov/news-and-events/features/cmt.html . Retrieved 8/22/12.
Ouellette, E., (2011). Awareness Month Leaves a Lasting Imprint. CMTA Reporter, November/December 2011.
Sweeney, J., and Collins, J., (2012). CMT Awareness Month 2012. CMTA Reporter, July/August 2012.
Zazzle website, (2012). CMTA Gifts. www.zazzle.com/cmta . Retrieved 8/22/12.