The Movies that Made Me: Life Lessons and SMA
During the recent Thanksgiving holiday, I spent a lot of time reading, going to movies, and streaming shows at home. I particularly enjoyed the Netflix documentary series “The Movies That Made Us,”…
Embracing My Inner Alien
— Kevin Schaefer
Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. 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.
Featured Post
A Cure SMA Travel Adventure That Starts With a Bump in the Road
As I write this, I’m sitting in the lobby of a Las Vegas hotel. This morning, I awoke to breathtaking views of giant Utah canyons, where rock formations spewed from the earth in spectacular fashion. Just a few days…
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My 10-year Challenge: Reflections on a Decade
If you’ve been on social media lately, you’ve probably seen a flood of posts with the hashtag #10yearchallenge. This trend, popular on sites such as Instagram and Facebook, prompts users to post…
My Rare Disease Family Goes Beyond SMA
Just a couple of years ago, I knew little to nothing about cystic fibrosis (CF), a genetic disease that affects approximately 30,000 people in the United States alone. My perspective is wildly different…
The Art of Rejuvenation: Time with Fellow Comic Nerds Inspired Me
My computer screen stared at me as a wave of unread emails and messages flooded my inbox. I work in management, so it’s not uncommon for me to respond to dozens of messages on a typical workday.
My Quality of Life Is as Important as My Physical Health
Recently, I spoke with my friends Jim and Becky Berry on the SMA News Today Podcast. In late 2018, they lost their eldest son Carson, who was a college student…
Taking Stock of the Advances in SMA Treatment and Research
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…
Halloween Unlocks a Spirit of Imagination
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…
Felicia Day Taught Me to Embrace My Weird
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…
SMA Experiences Make for Unique Coming-of-Age Stories
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 “…
I’m Rolling Through the Seasons After My Roller Coaster Summer
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. …
Disability, Pop Culture, and Acceptance in ‘The Pretty One’
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…
I’m a Work in Progress, and That’s OK
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…
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