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.

Articles by Kevin Schaefer

5 Tips for Going to School When You Have SMA

Living with SMA no doubt presents numerous challenges, but as they say, “where there’s a will, there’s a way.” A good education is just as important for SMA patients as it is for able-bodied students. Many go to public school from Kindergarten to high school, and go on to graduate…

My New Role Here at ‘SMA News Today’

Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a wide range of topics has been liberating, rewarding and it has allowed me…

The Most-Asked Question when Strangers See Me

Living with SMA or any kind of visible disability means that numerous awkward conversations inevitably will occur. It’s simply one of the things that happens when you’re in a wheelchair, especially when talking with kids or really, really dumb adults. Yet with all the…

New Wheels, New Freedoms

After three denials by my insurance provider, countless phone calls and my amazing neurologist fighting for me, I finally acquired a new wheelchair a few days ago. The process took a year, and while the insurance fiasco was a headache, at least this…

On Being Approved for Spinraza

Last week I wrote about the different perspectives within the SMA community toward Spinraza treatment, with a brief summary of where I stood on the issue. As it turns out, the day after that column, my family and I found out…