Ask most people if they’ve heard of Charcot-Marie-Tooth disease, and chances are they’ll say no.
That’s something families living with the condition hope to change when they gather Aug. 22 for the CMTA Chicago Walk 4 CMT at Hickory Creek Preserve in Mokena.
The annual walk is more than a fundraiser. It gives people living with the rare neurological disorder a chance to connect with others who understand the challenges that come with it while introducing the public to a disease that often goes unnoticed.
“It’s a disease that often goes undiagnosed for years,” said Kenny Raymond, head of communications for the Charcot-Marie-Tooth Association. “This event is led by local families living with CMT and brings the community together.”
Among those helping organize the event is Doreen Pomykala, who is also living with Charcot-Marie-Tooth disease.
Despite being one of the most common inherited neurological disorders, Charcot-Marie-Tooth disease remains unfamiliar to many people. The condition affects the peripheral nerves, gradually weakening the signals that travel between the brain and muscles. As the disease progresses, people may experience muscle weakness, numbness, poor balance and difficulty walking. Symptoms vary from person to person, and because they often develop slowly, many patients spend years looking for answers before receiving a diagnosis.
The Charcot-Marie-Tooth Association estimates about 135,000 people in the United States are living with CMT. Roughly 2,900 live in the Chicago metropolitan area, while about 5,100 call Illinois home.
Living with a rare disease can feel isolating, which is one reason events like the walk matter to participants. Parents have a chance to meet other parents. Newly diagnosed patients can ask questions of people who have been living with CMT for years. Longtime friends reconnect, and new friendships begin.
The event also helps support research through the Charcot-Marie-Tooth Association, which funds studies aimed at developing new treatments. Although there is no cure, researchers have made significant progress in understanding the disease, giving many families hope for the future.
Registration for the walk begins at 10 a.m. Organizers welcome anyone interested in supporting local families or learning more about Charcot-Marie-Tooth disease.