Owensboro Student, Siblings Spreading the Word About Charcot-Marie-Tooth Disease

On Wednesday, a woman and her two sons came into our lobby here at work. The oldest boy, Ryan, stepped up to me and asked if he could go on the air with me to talk about CMT. I correctly assumed he didn't mean Country Music Television. No, he wanted to discuss Charcot-Marie-Tooth disease (CMT).

Charcot-Marie-Tooth Disease

Also known as hereditary motor and sensory neuropathy, Charcot-Marie-Tooth is more specifically described by the Mayo Clinic as a group of inherited conditions that cause nerve damage, mainly in the arms and legs. Ryan, his younger brother Rhett, and his older sister Ryleigh all have Charcot-Marie-Tooth.

Symptoms usually begin in the legs and feet. Patients may lose feeling there. Others may be unable to tense their muscles. Over time, symptoms may start to affect one's hands and arms.

Ryan and his family have done their research, and he came prepared with a lot of valuable information about CMT, including questions that those unfamiliar with the condition should ask.

What You Should Know About CMT

For example, CMT patients need us to know that running and walking are much tougher, and that might make them feel left out. You can see how this is an important aspect for kids. Since it may not be outwardly obvious, Ryan reminds us that kids with CMT can't easily do things other kids can, but, by all means, don't leave him or anyone else with CMT out of the fun.

He said that he's getting stronger as he grows with the help of the amazing staff at Wendell Foster, who provide activities that help in that endeavor.

Ryan and his siblings receive tons of support and are also participants in research studies about CMT. He even hopes to donate his wisdom teeth for stem cell research.

One in 2,500 people has Charcot-Marie-Tooth disease, adding up to about 135,000 in the United States. Country superstar Alan Jackson may be the highest-profile celebrity with CMT.

What I saw while talking to Ryan was a bright, passionate, outgoing young man on a mission. His principal even plans to devote an entire day to CMT. In the following interview, Ryan says "bones" when he means "muscles"...

The key point, says Ryan, is that people become more familiar with CMT and understand the limitations of those who have it. And learning about Charcot-Marie-Tooth is as easy as clicking any of the links below.

https://www.twibbonize.com/nowyouseecmt

https://www.mda.org/sites/default/files/2021/07/CMT_factSheet_Jun2021.pdf

https://hnf-cure.org/wp-content/uploads/2022/12/CMT-Symptoms-Checklist.pdf

https://hnf-cure.org/wp-content/uploads/2025/08/CMT-Unseen-Poster.jpg