Recently, I attended the 2019 Cure SMA Chapter and Leadership Conference in Boston. There, I connected with friends I had met through previous conferences and listened to presentations from Cure SMA staff members, as well as updates from the pharmaceutical companies…
Embracing My Inner Alien
— Kevin Schaefer
Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, Bionews. He also hosts the SMA News Today Podcast. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.
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My late friend and colleague Michael Morale liked to utter a phrase to me whenever I had an aquatic therapy session: “Get strong.” Michael spoke with a thick Texan accent and the utmost sincerity as he emphasized those words. He fully believed that…
It’s my favorite time of year. I love the fresh autumn breeze that brushes past my face every time I go outside and the fact that it’s socially acceptable to run around in Freddy Krueger and Darth Vader masks. I’m…
The auditorium filled up quickly for a Monday night. Everyone was bursting with excitement. I sat in the back with my friend Jacob and posted on Facebook that I was about to freak out like a teenage fangirl at a Jonas Brothers concert. Yes, ladies, I’m…
Fun fact: I’m a huge sucker for the coming-of-age genre. I voraciously consume memoirs like “If at Birth You Don’t Succeed“ and religiously quote shows like “Boy Meets World.” I once wrote a paper…
My summer was a roller coaster of ups and downs. Amid all of my adventures and celebratory occasions, I also dealt with loss and my fair share of chaos. That’s life with SMA in a nutshell. June began with a rush of excitement. I took a…
In 2017, writer Keah Brown created the hashtag #DisabledAndCute. To Brown’s astonishment, this phrase sparked a viral social media movement. As the hashtag flooded her Twitter and Instagram feeds, Brown saw countless individuals with disabilities embrace a message…
A few weeks ago, someone posted a question in a Facebook group for people living with neuromuscular conditions. The question, composed of a few simple words, prompted me to stop and think. How’s your life going right now? A question like this should be…
I remember it like it was yesterday. Every muscle in my body tensed up as I looked at my parents from across the kitchen table. I had never before felt as nervous as I did at that moment. Even as I tried to remember the details of my…
For most people, lifting weights is a suitable form of physical exercise. For me, successfully turning just one page of a book makes me feel like I’ve run a marathon. It’s a special kind of feat if I manage to flip through a thick paperback on my own.
It’s Sunday night, and I’m surrounded by an assortment of books, comics, DVDs, Blu-rays, action figures, and other items that one might find in a 5-year-old’s room. The only outlier is my framed college diploma, which hangs right next to a giant Batman poster. Indeed, this…
It was my last semester of college, and I had room for one more writing class in my schedule. I already had two film courses, a literature survey, a fiction-writing workshop, and a general education requirement I had put off until the last minute. (You could say that…
I’ve been an active member of the SMA community for years, but one of my fondest memories from any SMA conference took place last year in Dallas, Texas. As I chatted with my friend Doug, another friend’s 5-year-old daughter joined our conversation. Her…
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