From a cursory internet search, it’s easy to find many articles that describe certain Charcot-Marie-Tooth (CMT) symptoms as mild. Some even refer to types of CMT that way. For years, I didn’t think too much about it. After all, I first started seeing these types of articles as…
On My Own Two — Young Lee
Young Lee (he/him) is a writer with CMT1A living in Cary, North Carolina. He graduated from NC State University in 2013 with degrees in economics and international studies. After working for a few years in finance, Lee decided to shift his attention toward writing and library work. Although Lee first learned he had CMT at a very young age, he didn’t participate much in the CMT community until 2018 when his friend and fellow writer Kevin Schaefer encouraged him to explore and learn more about this very important aspect of his life.
Last in a series. Read part one. In her latest fantasy novel, “Katabasis,” R.F. Kuang constructs a character who serves as both an oppositional moral force for her two protagonists and as a goal that her protagonists pursue to the farthest reaches of hell. That character is…

I remember the first time I saw the Zeen. A fellow Charcot-Marie-Tooth (CMT) patient had posted a video and some pictures of it on social media. From their posts, it was clear that this device was similar to scooters, wheelchairs, and rollators, yet I’d never seen a mobility…
After a recent conversation with Bernadette Scarduzio, my friend and fellow Charcot-Marie-Tooth (CMT) advocate, regarding the inaccessibility of short-term rentals, I’ve been thinking a lot about accessibility. It’s a buzzword in the disability community, but for many, the concept is nebulous. This truth was highlighted by Scarduzio’s…
There are many things we in the Charcot-Marie-Tooth (CMT) community mourn. Among them are old passions, activities we used to love, and dreams we might’ve realized had CMT symptoms not gotten in the way. But in speaking with other CMTers, one unfulfilled desire I often hear about is…
Those of us with Charcot-Marie-Tooth disease (CMT) know it touches nearly every aspect of our lives. That’s true for anyone who is similarly disabled or has a chronic condition. For CMTers, the disease symptoms affect our mobility. Many of us have sleep apnea, which can lead to daytime…
Touch, taste, smell, hearing, and seeing: I don’t know if things are different these days, but when I was in elementary school, those were the five senses I learned from my teachers and textbooks. Until recently, I didn’t know there were others. But indeed, there are at least two other…
For much of my life, I avoided talking about Charcot-Marie-Tooth disease (CMT) and how it affects me. I didn’t mention it to the personal trainers I worked with, and most of my teachers and college friends were unaware I had it. I even went so far as to perpetuate…
Roger Ebert, the late film critic, said many things about the long careers of actors Robert De Niro and Al Pacino. But one particular observation of his has stuck with me over the years. In his review of “Heat,” the 1995 crime drama directed by Michael…
A woman walks into a coffee shop, orders a coffee, and looks around for the man she’s agreed to meet — her date. When she spots him waving at her from a table he’s found for them, she starts walking toward him. As she walks, it becomes clear she doesn’t…
I imagine most have heard the phrase “the truth will set you free.” I’ve heard some folks apply these words as general advice against spreading lies. Others appreciate the Christian roots of the phrase. I once even heard a person use the quote in the context of sales…
I don’t plan to ever discourage anyone from making New Year’s resolutions. But I also like to think I’m not the only one who, at one point or another, had an aspiration to get fit and set it as some kind of nebulous goal to be accomplished by the end…
On Halloween evening, I sat outside on a beach chair with a tub of candy in front of me. It had been a long time since I last handed out Halloween candy to the neighborhood kids. The past few years, of course, were disrupted by the pandemic. But this year,…
Recent Posts
- Rare mutation drives woman’s unusual CMT symptoms: Report December 11, 2025
- Ankle, foot surgery allows adults with CMT to achieve personal goals November 13, 2025
- Existing in the tension between thoughts and actions, part 2 November 11, 2025
- Existing in the tension between thoughts and actions, part 1 October 21, 2025
- Partners team up for long-awaited trial of CMT4J gene therapy October 8, 2025
- Advocates aim to raise visibility of CMT during Awareness Month September 10, 2025
- In youth fitness programs, inclusion is the key September 9, 2025
- Zeus KAFO brace aims to support mobility in CMT, other conditions August 13, 2025
- Unraveling the Gordian knot of sleep issues and CMT health July 31, 2025
- Cure CMT, Tamarack join to expand patient access to orthotic devices July 9, 2025