Charcot-Marie-Tooth Association

The Charcot-Marie-Tooth Association (CMTA) announced the formation of a new local branch in Madison, aimed at searching for and serving every person with CMT in the area.

Anyone with an interest in CMT is invited to attend the first meeting of the Madison Branch at 6:30pm on December 2nd, 2015.  The meeting will be held at The First Weber Corporate Office, 5250 E. Terrace Drive, Madison, WI 53718. For more information about CMT, please visit www.cmtausa.org.

Charcot-Marie-Tooth is a progressive disorder of the peripheral nerves that causes people to lose the normal use of their feet and legs. CMT affects some 2.8 million people of all races and ethnicities worldwide, though many of them are misdiagnosed or not diagnosed at all.  Symptoms include: Foot deformity (very high arched feet) and foot drop (inability to hold foot horizontal); a slapping gait (feet slap on the floor when walking because of foot drop); loss of muscle in the lower legs, leading to skinny calves; numbness in the feet; and difficulty with balance. Hands and arms may also be affected. CMT is not fatal, but it is currently incurable.

The CMTA is a patient-led association that is aggressively searching out a treatment for CMT, putting together a group of top-flight researchers and experts and directly funding their work. CMTA launched the Strategy to Accelerate Research, or STAR, in 2008 to capitalize on breakthroughs in genetics and dramatically speed up the pace of CMT research. Since then, the CMTA’s STAR Initiative has made great strides toward developing treatments for CMT.

Debi Weber and Jessica Wells, co-Lleaders of the Madison CMTA Branch, emphasized the importance of making the public aware of the symptoms of CMT so that those with the condition can be identified and benefit from the treatments once they are available.

CMTA branches like the new one in Madison are the CMTA’s point of contact with people who have the disease, providing a forum for them to share tips about living with CMT, hear from expert speakers, raise CMT awareness and raise funds for the research that is moving ever closer to a drug treatment for the disease. There are currently more than 70 CMTA Branches in the United States, Canada, and Mexico.