Kelly Detta-Hall says Charcot-Marie-Tooth (CMT) disease remains one of the most common, yet relatively unknown, diseases in the world.
On Sept. 25, the 6th annual walk for CMT Fergus fundraiser was held at Victoria Park.
CMT Awareness Month in September brings attention to what is described as the most commonly inherited peripheral neuropathy in the world, affecting 1 in 2,500 people.
The intent is to not only educate those with CMT but those who provide support and care to the CMT community. All pledges go directly to the CMTA for research in finding a cure.
Detta-Hall said the event at Victoria Park is the 6th annual walk.
“I’m affected by this peripheral nerve disease, which means the protective coating on one’s nerves dies,” she said. “Therefore muscles waste away and virtually die off.”
Eventually those with the disease are unable to walk, and lose strength, she said, noting it affects hands and feet the most.
Victims can get tremors, carpal tunnel, pain, etc., said Detta-Hall, whose father is also affected. She noted 2.1 million people are affected worldwide.
In the last six years, Detta-Hall has met over 250 families in southern Ontario with the disease. Those families have either attended the annual walks or taken part in support groups.
During four to six meetings each year, Detta-Hall brings in educators, speakers, consultants, foot care nurses … anything to teach someone how to care for themselves as the disease progresses.
She said the main reason behind the walk is to fuel research.
“A lot of research is happening in Germany right now. We’d like to support that because I want a cure,” she said.
“I want to live a nice long healthy life where I can walk independently. I want to see the same for my children and their children.
“I want to see an end to this disease to make their lives brighter.”
She said education is important “because a lot of medical professionals here in Canada don’t know about it.”
Detta-Hall said each year the group seeks sponsorship from anyone providing support services. For more information, to volunteer or donate contact southernontariocmt@hotmail.com or call 519-843-6119.
