With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely…
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Anyone who knows me knows that sports are my favorite thing in the world. Although football is my most beloved sport, basketball has a more personal element to it. For starters, you can see the players more clearly,…
2018 was my best year in a long time. I acquired a JACO robotic arm, got more work, and made a little more money. This January also saw a couple positive developments: I spoke at church and began “…
With the annual Cure SMA Conference having recently wrapped up, the topic of travel has once again leaped to the forefront of discussion in the SMA community. The conference was on the West Coast this year, close enough…
As someone living with SMA, I rely on various machines and medical equipment to function and stay alive. While I’ve never been blind to this, I often take my situation for granted. Occasionally, however, an incident occurs that snaps…
Everyone with SMA has their own view of life with the condition, and for that matter, of life itself. However, after talking with some contributors to the SMA News Today Forums, it has become clear that I have…
I’ve dedicated columns to my two best friends Darren and Sam before. They’ve been pillars in my life for as long as I can remember. While I’m a few years older than them, we more or less…
SMA is obviously a chiefly negative condition. I don’t think that requires any explanation. However, living with this disease also has a few silver linings, which I’m always looking out for. It’s immensely helpful to keep a…
New life experiences are welcomed when you’re a columnist. I’ve already written about notable stories from my past, and I generally don’t enjoy sharing my two cents on current events. I don’t want to beat a dead…
My nearly three-year streak of good health came to a screeching halt at the beginning of March. I guess you could say March Madness came a little early for me. I came down with a nasty virus…
For a couple weeks, I’ve been in a malaise and I couldn’t pinpoint the source of it. Of course, the occasional bad day will happen, but this was prolonged. Reading various columns and SMA News Today…
Last in a series. Read parts one, two, and three. To wrap up this series of conversations with people close to me, I interviewed my best friend, Sam DeVos. Sam is one of the…
