In April 1977 more than 100 people with disabilities entered the Department of Health, Education, and Welfare (HEW) office in San Francisco and, in protest, they refused to leave. Three years prior, Congress had passed Section 504 of the Rehabilitation Act…
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…

I remember being a moody preteen and exasperating my tennis instructor. He was convinced that I wasn’t trying. I was slow to react and sluggish on the court. I didn’t seem to be giving it my all. And, to be fair, he was right. I know I could have given…
Going Over My Old CMT Records
“Referred mainly because of toe-walking.” “Well, these few words solve a bit of a mystery for me,” I thought. A few weeks ago, I contacted my former pediatrician’s office to see if they had my old medical records. My folks have always kept good…
Jamal Hill likes to keep a busy schedule. After all, he’s hoping to qualify for the 2020 Paralympic Games in Tokyo. And although he’s currently the No. 1 ranked U.S. Men’s Paralympic swimmer in the 100-meter freestyle, he isn’t yet guaranteed a spot in the Paralympics. I…
We Are More Than Our Mutations
Linda Crabtree’s autobiography, “CMT and Me,” begins with loving descriptions of her parents. Her words, accompanied by childhood photos printed on the pages, gave me a vivid sense of what kind of people her parents were. I was eager to lose myself in Crabtree’s imagery of growing up…
Five years ago, I had a conversation with one of my writer friends. I had heard through the grapevine that she was working on a new story: a thriller featuring a protagonist with Charcot-Marie-Tooth (CMT). I was surprised at her choice of lead character because CMT isn’t a well-known…
When I meet up with old college friends, we often spend time reminiscing. We recall late nights, trips, and past relationships. Looking back, we think about how much has changed in our lives; our careers, relationships, and bodies have altered a lot in the decade since graduation.
This past week, I grabbed lunch with an old friend, Kevin Schaefer. He writes a great column for SMA News Today. Our conversations over lunch usually revolve around nerdy topics such as the latest trailer for “…
About 10 years ago, I found myself walking down a busy side street near one of the larger night markets in Taipei, Taiwan. No direct family members lived there, and although I am ethnically Chinese, my Mandarin is extremely limited. In short, I’m what those in the Asian…
Once, while I was walking down the hallway with my classmates, my high school Spanish teacher asked me if I had hurt my ankles. It may have been the first time he had watched me walk. He then proceeded to walk ahead of my group to demonstrate my…
Charcot-Marie-Tooth. The first word is pronounced like “Shar-ko.” And it has nothing to do with shark teeth. That’s how Arlene, the protagonist of “Arlene on the Scene,” clears up the confusion related to her disease’s name.
I couldn’t help but smile when I saw Bernadette Scarduzio pop up in the final moments of Episode 3 of the sixth season of “Orange Is the New Black.” Her character has no dialogue, but she and her scooter are on screen long enough to make an impression…
Recent Posts
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- 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