About a year ago, my sister and I went to an arts and crafts store. Upon entering, I instinctively wanted to steer the shopping cart, an offer my able-bodied friends and acquaintances often appreciate. But before I could get a complete sentence out of my mouth,…
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.
Second in a series. Read part one. Last year, the world lost a powerful voice in the disability community with the death of Alice Wong. Born with a type of spinal muscular atrophy (SMA), her life was not given much attention by mainstream media, and her ideas…

“We’re all Forky, feeling like we’re trash, but we’re also all Woody, trying to convince each other that we’re not trash.” A friend of mine tweeted those words shortly after seeing “Toy Story 4” last year. At the time, I thought it was a cute and…
“TrumpWearsAdultDiapers”: It’s a hashtag I first noticed trending in the United States on the morning of June 14. And I remember looking at it with mixed emotions. On one hand, I think it’s a small sign of progress toward…
The indoor track of my alma mater’s gym smells like rubber and sweat. It has a specific warmth to it. The repeated impacts of dozens of feet send shockwaves through the track and almost make it feel alive. It’s been more than 10 years since I’ve…
A couple weeks ago when I spoke with Steve O’Donnell, a board member of the Charcot-Marie-Tooth Association and founder of the nonprofit Therapies for Inherited Neuropathies, I was struck by his enthusiasm and can-do spirit.
“Just keep moving.” For Steve O’Donnell, a Charcot-Marie-Tooth Association board member and founder of the nonprofit Therapies for Inherited Neuropathies, those are words to live by. He calls them his life’s slogan. The slogan helps him self-motivate to…
During this time of self-isolation due to COVID-19, I’ve often thought to myself, “At least I can still play video games and watch esports.” And I know for many others, gaming has been a nice outlet and a source of comfort and…
After about three weeks of most nonessential workers in my state self-isolating due to COVID-19, I began to see a steady stream of codes and screenshots appearing on my social media feeds. It was an influx of Animal Crossing posts. Animal Crossing, a life-simulation video game, invites players…
During tough and stressful times, it’s important to remember to hold each other close. This time, though, let’s take that figuratively and not literally. A recent conversation with a Charcot-Marie-Tooth community icon, Bernadette Scarduzio, reminded me of this lesson. It may…
Hello, I hope you are well. It’s a difficult time for many of us no matter where we live, as the COVID-19 virus has spread to most of the world by now. By the time this is published, I don’t know what the situation will look like. However,…
As an Asian American, I shared the joy and pride felt by much of the global Asian community when “Parasite,” a South Korean genre-bending thriller directed by Bong Joon Ho, won best international feature film, best picture, best…
Social media can be an overwhelming vortex of opinions, grievances, and feelings. That is especially true of my Twitter feed. At its best, my Twitter feed is where I can pass the time laughing at memes from friends and musings from celebrities. At its worst, it is home…
Recent Posts
- Gene therapy Engensis shows early signs of benefit in CMT1A patients
- Unpacking my beliefs on physical strength, part 2
- Unpacking my beliefs about physical strength, part 1
- NMD Pharma’s oral drug ignaseclant improves muscle strength in CMT study
- Healthy eating can be challenging for adults with CMT, new study finds