A few days ago, I found myself searching online for Charcot-Marie-Tooth (CMT) memes. While my actions might seem a bit juvenile, I needed a laugh. I was also looking for some insight into the CMT community — this group of people to which I belong due to the nature…
On My Own Two by Young Lee
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…
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…
Recent Posts
- Unpacking my beliefs about physical strength, part 1 February 24, 2026
- NMD Pharma’s oral drug ignaseclant improves muscle strength in CMT study February 17, 2026
- Healthy eating can be challenging for adults with CMT, new study finds February 12, 2026
- Considering the impact of AI on the disability community February 10, 2026
- CMT patient advocate to be honored by MDA for helping advance research January 15, 2026
- 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