Ryan is a simple man from Bend, Oregon. While he aspires to one day become a sit-down comedian, he has turned most of his attention to writing. He loves sharing his life experiences with people and bringing awareness to his disease. His two favorite things are sports and coffee.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 qualified to comment on the concept of rarity. However, I struggle…
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, as they’re not covered with armor like in football. It’s also…
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 “Ryan’s Robotics” for the SMA News Today YouTube channel. Things seemed…
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 for me to drive to. I attended the 2016 conference, also…
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 me back to the reality of my fragility. Last week, my…
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 a different outlook than many do. I don’t mean that I…
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 grew up together. However, they’ve now both reached the milestone of…
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 positive mindset and cling to the things I actually have going…
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 horse, or perhaps more accurately, beat Dr. Phil with a reusable…
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 that quickly turned into pneumonia. While I had pneumonia on roughly…
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