What keeps you up at night? For me, it’s recently been the idea of “run, hide, fight,” which is survival advice for when there is an active shooter. Those are scary words for someone with a disability. My disability may be “invisible,” but I won’t be invisible to a…
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“Those who have known you for years love you for what is between your ears, not what is on your ankles.” A dear friend said that to me the day I was fitted for my first pair of ankle-foot orthosis (AFO) braces. I was, and still am, feeling very conflicted…
Do I want to go hiking with you? Yes. But the bigger question is, “Can I?” Will the path be steep? Is it narrow? Is it rocky? You see, these things scare me and make it difficult for me to attempt to hike, even if I truly want to join…
The other day, I went on a field trip with my fourth-grade class to the Library of Congress in Washington, D.C. We had to do a fair amount of walking from where the bus dropped us off, then we toured the building. When we returned to school, my…
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