A month dedicated to one of the most commonly inherited peripheral neuropathies in the world – Charcot-Marie-Tooth Disease (CMT) – has been planned for September, as proclaimed by the Southern Ontario CMT Action and Support Group located in Fergus.
Kelly Detta-Hall of Fergus, facilitator of the CMTA and who is personally affected by CMT, is hoping the planned events will reduce misdiagnosis and increase funding to support CMT-related treatments.
“CMT Awareness Month is about spreading awareness in our community and across Canada, it’s about educating medical professionals and reaching those who are or may be affected by this disease and to educate not only those who live with CMT, but also the tens of thousands of people who provide support and care for the CMT community,” said Detta-Hall.
“We need doctors and other medical professionals to know what this disease is and how to treat the progressive symptoms. We are committed to seeing changes in Canada and will exhaust all resources to gain support and recognition of this disease.”
An estimated one in every 2,500 people – 2.6 million worldwide – has CMT.
It is a progressive disorder that causes the nerve cells leading to the body’s extremities to slowly degenerate, resulting in the loss of normal use of the hands/arms and legs/feet.
It may also lead to a loss of sensory functions and structural changes. CMT strikes people of all ages, genders, races and ethnicities, yet sometimes is overlooked and not routinely diagnosed in patients.
Facilitators nationwide are planning activities in recognition of CMT Awareness Month 2013.
Support and Action Group Day will take place on Sept. 21 and a Global Day, scheduled for Sept. 28 will unite international organizations to raise awareness.
In addition, the Southern Ontario CMT Action and Support Group will be hosting its third annual Walk for CMT Fergus Fundraiser on Sept. 29 at 9:30am at Victoria Park in Fergus.
There will also be a CMT Health Conference hosted in Fergus on Nov. 30 with Dr. Shy, the director of the CMT Clinic and co-Director of the Neuromuscular Program and MDA Program at the University of Iowa.
For more information on what’s happening or to become involved contact Kelly at 519-843-6119 or email southernontariocmt@hotmail.com. You can also visit the CMTA website at www.cmtausa.org or become a fan of the official “Charcot-Marie-Tooth Association on “The Time is Now” Facebook Fan page (www.facebook.com/CMTAssociation) or call the CMTA at 1-800-606-2682.
