A few weeks ago, when I was preparing for my eighth Spinraza injection, I had to indulge in an activity that many of us with SMA dread. We manage everything from pneumonia to travel fiascoes, but having to get blood drawn is…
Embracing My Inner Alien - a column by Kevin Schaefer
On May 24, Zolgensma (previously known as AVXS-101) became the second FDA-approved treatment for SMA. This gene therapy from pharmaceutical companies AveXis and Novartis is a major milestone for the SMA community, as it follows Biogen’s groundbreaking treatment Spinraza (nusinersen)…
Those of us who have SMA live surrounded by other people. We rely on others to bathe us, get us dressed, help us eat, move our hands, drive us to work, and to be available for any other tasks we may need assistance with throughout the…
I now know what it was like for Mary and Joseph when they were trying to find a room in Bethlehem. While we didn’t have to resort to sleeping in a manger, my parents and I had quite the adventure searching for an accessible hotel room in the…
A couple of months ago, a woman stopped me in the hallway of the clinic I go to for physical therapy. She overheard me talking with one of my physicians about my Spinraza (nusinersen) treatments, and she asked me to speak with her two teenage sons who…
If someone had told me a few years ago that I would love going to physical therapy every week, I would have laughed. Let’s just say that the idea of letting other people stretch my arms and legs, contort my muscles into uncomfortable positions, and make me do…
They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us tend to have one or two primary caregivers, the reality is that we depend on countless people every day…
When it came time to plan for my brother’s bachelor weekend festivities, I was adamant about participating as much as possible. Events like this aren’t always inclusive for people with disabilities, but the two guys who planned this weekend wanted to make it accessible for me. I knew…
On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal. My mission was to obtain two tickets for the opening night of…
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of challenges. There was also that time I mustered the courage to ask a girl…
