A few days ago, I was talking with my friend Young, a fellow journalist and comic book enthusiast who now writes a column for Charcot-Marie-Tooth News. Ever since we started having conversations about our disabilities, and since I lured him…
The SMA News Today forums section of this website https://smanewstoday.com/forums/ launched in January 2018, and it now has close to 300 members. This platform exists so that people in the SMA community can connect with each other, ask questions,…
I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but nevertheless, I want to subvert the stereotype that every person in a wheelchair just sits…
As a kid, there were two things I really couldn’t stand: math and pulmonary function tests (PFTs). I was too young and naive to have an angry fanboy mentality toward the “Star Wars” prequels. Math, however, didn’t coincide with my interests or adolescent…
I live my life surrounded by machines. I wake up every day wearing a soft nasal mask, which is connected by a large tube to my BiPAP machine. The steady flow of air pumping through the tube is the first thing I hear in the morning.
To any parent who has a child with SMA: Recently, I had a conversation with my caregiver Randy about our goals for the future. We talked about career goals, relationship goals, and all of the things we each wanted to do with our adult…
Full disclosure: I think Leif Erikson Day is far more legitimate than Valentine’s Day. Even though its popularity stems from the fictional universe of “SpongeBob SquarePants,” at least its origin isn’t directly linked to a beheading. Though I do think…
If someone asks me to speak in front of hundreds of people, I say “no problem.” Stick a needle in my neck for a Spinraza injection, and it’s no big deal. When it comes to traveling across the country for an SMA conference or…
Even before its theatrical release, the new film “The Upside” garnered its fair share of criticism from a number of disability activists on social media. Its main controversy stems from the fact that it’s yet another example of an able-bodied actor playing a…
Across social media platforms right now, there’s a trend where people post pictures of themselves from 10 years ago next to current ones. The idea is to see how much people have changed over a decade and to laugh at embarrassing old images. It’s been entertaining,…
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