• Sat. May 14th, 2022

Support group stays active despite debilitating illness

ByJulie J. Helfer

Feb 16, 2022

BRANDON, Fla. — Over the past few months, many support groups have slowly transitioned from zoom meetings to in-person rallies. For one group, the wait was very long because they are based on moving in a way that is positively Tampa Bay.

Ed Linde doesn’t just knock down pins, he knocks down barriers. He was diagnosed with Charcot-Marie-Tooth disease, or CMT, when he was just five years old.

“It’s not a fatal disease, but it can be debilitating,” Linde said.

Over Ed’s lifetime, the neurological genetic disease slowly wore down his ability to use his hands, legs, and feet, but it didn’t wear down his mind.

“Adaptation is a big word in my vocabulary, whether it’s bowling, dancing, motorcycling, if I can find a way to do it I’m going to keep doing it,” Linde said.

It is this motivation that defines the men and women who call themselves the Funky Feet Tribe, a support group for people with CMT and their families.

“You know, ‘yes’ I have CMT but I’m strong with my CMT so I honestly think it’s a strong community that I’m so lucky to be a part of,” Sarah Gentry said.

In addition to many activities, the group also has an array of talks that are positive for Tampa Bay, building morale and learning from each other.

“The first meeting my wife went to, she came home in tears because she didn’t realize that some of the issues I had were part of my illness,” Linde said.

“When we left that meeting, I told him I felt so small and he said, ‘Why is that? “, because everyone in the room was like you and I had no idea,” said his wife Vicki Linde.

CMT affects one in every 2,500 people. The Funky Feet Tribe said it was important for Tampa Bay to know what the disease is and what is being done to fight back.

“A lot of people haven’t heard of it, they immediately think of CMT, Country Music Television, so really it’s taking that out and telling the story of those who have CMT,” Gentry said.

For more information, visit cmtausa.org.