The organizers of the CMT Awareness Month 2013 began planning for the 2013 event shortly after the successful 2012 CMT Awareness Month ended. Through this event, the Charcot Marie Tooth Association (CMTA) educates the public and raises awareness about Charcot Marie Tooth (CMT). September has now been officially recognized by New Jersey and Tennessee.
For the 2013 CMT Awareness Month, the Charcot Marie Tooth Association has arranged a month’s worth of activities. Every day, participant’s can check for something new. There will be a new fact, suggestion for raising awareness, video to watch, or webinar to attend each day of the month. The CMTA will be taking nominations for their annual Charcot Marie Tooth Association “I’m a Star!” and “I’m a Shooting Star!” contests, as well.
For those of you who are eager to spread awareness in your community, you can also order the CMT Awareness Month Kit, as well as other CMT-themed items, from the CMTA website. In order to spread awareness through your online social networks, a CMTA Awareness Month Ribbon has been made available at www.cmtausa.org/url/cmtfacts . This ribbon can be used as your facebook profile picture.
If you have not yet done so, make sure to like the Charcot-Marie-Tooth Association: The Time is Now facebook page at www.facebook.com/CMTAssociation as well. This page grew from 2000 likes in May, 2012, to over 6,000 shortly after the 2012 CMT Awareness Month, and has over 9000 likes in August, 2013.
During the 2012 CMT Awareness Day, events included National Support Group Awareness Day and Global Awareness Day The CMTA held its first-ever Charcot Marie Tooth (CMT) Awareness Month in September of 2011, following up on the successful Charcot Marie Tooth Awareness Week in September of 2010.
CMT Awareness Month has become international. For example, efforts to raise awareness about CMT during September, 2013 have also been announced by CMT United Kingdom
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, 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 again participate 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.
CMTA, (2012). 2012 – Year of Progress for Everyone with CMT. Retrieved from http://www.cmtausa.org/index.php?option=com_content&view=article&id=608&catid=7&Itemid=61 on August 17, 2013.
CMTA, (2013). Awareness Month is Almost Here. Retrieved from http://www.cmtausa.org/index.php?option=com_content&view=article&id=697&catid=7&Itemid=61 on August 17, 2013.
CMTA, (2013). CMT Awareness Month Kit. Retrieved from https://www.cmtausa.org/index.php?page=shop.product_details&flypage=flypage.tpl&product_id=21&category_id=2&option=com_virtuemart&Itemid=32&redirected=1&Itemid=32 on August 17, 2013.
CMTA, (2013). Governor Christie Proclaims September CMT Awareness Month! Retrieved from http://www.cmtausa.org/index.php?option=com_content&view=article&id=709&catid=7&Itemid=61 on August 17, 2013.
CMTA, (2013). State of Tennessee Issues Proclamation. Retrieved from http://www.cmtausa.org/index.php?option=com_content&view=article&id=677&catid=7&Itemid=61 on August 17, 2013.
CMT United Kingdom, (2013). Get Involved –with Awareness Month. Retrieved from http://www.cmt.org.uk/get-involved.php on August 17, 2013.
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 August 17, 2013.