Sam Ray: recent publications

Why We Need to Expand Access to Exoskeleton Technology

by Sam Ray (Ally’s son), age 15

As a teen with facioscapulohumeral muscular dystrophy (FSHD), there are many things I wish I could do. I have the infantile-onset form of the disease, which means I have experienced symptoms since birth. Infantile onset is more severe than the adult-onset form of FSHD. While many people with the disease are able to walk and even run during their childhoods, I use a wheelchair and I am unable to raise my arms. My disease’s progression has forced me to give up many of the things I love, like playing the guitar, drums, soccer, skiing, and just being able to get in a friend’s car or walk into their house. But what if there was technology to enable me to walk, play sports and pursue my passion for music?

I started

people liking life

Sam Ray