Flying can be an ordeal for many people with disabilities who rely on wheelchairs to get from point A to point B. Sometimes disabled travelers get to their destination only to realize their wheelchair or scooter is broken or missing. In 2019, the year after airlines were required to release…
As my Duchenne muscular dystrophy has progressed, it’s become untenable for me to live on my own without outside help. We’ve begun seeking professional caregiving assistance while my parents are away on vacation or work trips. It’s nothing major — mainly help with cooking, cleaning, getting into and out…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…
Being in a power wheelchair, getting fatigued more easily than the average person, and walking with a waddle-like gait are a few bullet points on a long list of Duchenne muscular dystrophy symptoms that make me self-conscious. But more than that, these realities of living with a…
I started writing for my high school newspaper, The Bolt, when I was 17. Now 24, I’m telling the stories of people who make an impact in their rare disease community for BioNews, the publisher of this site. Over the last seven years, I’ve had the privilege of conducting…
When I was a toddler, my parents would sit me up in my highchair in front of a big bowl of broccoli. It was around dinner time, while they were still preparing the food, so I was a very hungry baby. I could only eat the rest of the meal…
I came down with a nasty cold two weeks ago, and even though I was sick, felt terrible, and knew I needed to rest as much as possible because I also have Duchenne muscular dystrophy, I was still judging myself for not working toward my looming deadlines. I’ve…
After being diagnosed as a carrier of x-linked myotubular myopathy (XLMTM) and losing her infant twin boys to the disease, Ashley Walker was driven into an episode of alcoholism. What she didn’t know then was that her liver was affected severely by the disease, which eventually resulted in an…
Last week, I traveled to the headquarters of my employer, BioNews, the publisher of Muscular Dystrophy News Today. The trip took me from Newport Beach, in Southern California, to Pensacola, in the Florida Panhandle. While it was an interesting experience, it wasn’t without its challenges, especially with Duchenne…
I recently started watching a YouTube channel called Yes Theory, which inspires people to “seek discomfort.” The cast of the video blog often go on trips to remote parts of the world, perform on the street, or push their bodies to the limit, all in the spirit of being…
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