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 - a column by Kevin Schaefer
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…
