Riding the Roller Coaster of Being a 20-something With SMA
In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in…
Articles by Kevin Schaefer
Conference Chaos: Returning to Reality After a Weekend With My SMA Community
“You just gotta keep livin’, man. L-I-V-I-N.” Matthew McConaughey first delivered his iconic “Alright, alright, alright” catchphrase in the 1993…
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…
Spinraza Update: Why I Still Get a Needle Jammed in My Neck Every 4 Months
A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved…
Life Advice From My Hippie SMA Friend
I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through…
Who Am I? Embracing My SMA Advocacy
I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce…
How a Meltdown Changed My Life for the Better
I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of…
Imagining a World Without Ableism
A friend and I were sitting in a dimly lit movie theater a few years ago when two guys in…
Why Be Normal When We Can Be Special?
The Netflix series “Special” opens with its main character, Ryan, getting hit by a car and thrown into an…
Defying Monotony in Life With SMA
“Hello, Peter. What’s happening? Umm, I’m gonna need you to go ahead and come in tomorrow. So, if you could…