Families united by the challenges of Charcot-Marie-Tooth disease (CMT) are taking a proactive step to combat this neuromuscular condition. The local chapter of the Charcot-Marie-Tooth Association (CMTA) is organizing the Tampa Bay Area Walk-4-CMT and Family Picnic to raise awareness about the disease.
CMT is a hereditary neurological disorder, frequently showing up in childhood or early adolescence. The disease gradually worsens over the course of a patient’s normal lifespan. This progressive deterioration stems from damage to the peripheral nerves, impairing communication between the brain and the limbs.
Ultimately, this nerve damage results in the progressive loss of muscular function and mobility. Patients experience increasing weakness and atrophy in the affected muscles, leading to deformities, difficulty walking and problems with fine motor skills. The profoundly cumulative impact on physical function is typically slow, spanning decades, requiring those affected to continually adapt to their diminishing physical capabilities.
Tampa Bay, FL CMTA Branch leader Ed Linde was diagnosed with the disease at the age of 5, and more than 60 years later he looks back and credits CMTA with helping him learn how to adapt to the disease to live a full life with a family, career and hobbies, like riding motorcycles and bowling.
“As an organization, CMTA has supported me throughout my lifetime journey,” he said, citing help with accessing training and medical resources.
Linde has written a book about his life and experience with CMT titled Courage Motivation Tenacity: Living with a Progressive Disease. It provides insight into what life can sometimes require of someone in order to live as fully as possible and is available through Amazon.
This year marks a postpandemic return of what is a popular event in the Tampa Bay CMT community.
“This is the first one we’ve had since COVID, so it’s been a few years,” said Linde, a Riverview resident.
The Tampa Bay Area Walk-4-CMT and Family Picnic is from 10 a.m.-2 p.m. on Sunday, March 29, at MacFarlane Park, located at 1700 MacDill Ave. in Tampa. There will be a quarter-mile shaded walk, and attendees are asked to bring a covered dish for sharing. You can register or make a donation at https://cmtausa.org/tampawalk/, and you can learn more about the CMTA organization as well as information about the disease itself at https://cmtausa.org/branches/tampa-bay/.
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