Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. On our way home from the annual Cure SMA conference, I told my mom, “Wouldn’t it be funny if…
On the second Saturday of every August, the setting sun fades and is replaced by the ethereal glow of candlelight. Around the world, the SMA community comes together for a twilight vigil to remember our loved ones who have departed and to honor those living with SMA. Candle-bearing crowds…
My love for the beach has always been passionate yet complicated. Sure, it’s my happy place. The sound of ocean waves crashing into the shore, the peacefulness that envelops me when I reach the sand and feel that salty breeze, the way the sunshine hits during those early mornings…
For the past two years, my best friend and fellow columnist, Brianna Albers, and I held a tradition of collaborating with each other for SMA Awareness Month. We’ve written companion columns about the pros and cons of our respective countries (she lives in the U.S., while I’m…
At the latest pop culture convention I attended, I waited in line for 45 minutes on a Saturday morning with a host of like-minded geeks. But the line wasn’t to meet my favorite celebrity, voice actor, or comic book creator. It was just to get on the elevator. Having gone…
When I travel, even if it’s just to a friend’s house, I carry with me a lot of stuff. Among it all is my most handy gadget and trusty companion: a voice amplifier, a small piece of equipment I found on Amazon for a reasonable price. The other…
I didn’t even know about the “Barbie” movie until I saw people talking about it on social media. I watched the trailer and thought, “That looks like a funky little movie.” But I wasn’t particularly enamored with it. I figured I’d watch it once it hit streaming services,…
Who doesn’t love the luxuries and amenities of vacation? Swimming pools, complimentary breakfast, new sights and experiences, and a freshly made bed to return to after a day of relaxation or adventure. Disabled people and our families also appreciate these comforts, but when you’re vacationing with SMA…
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two reasons: to get extra help and prove I was determined (and doing what I could) to…
As SMAers, we’ve probably all been there. We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into the routine of our daily needs. Our schedule finally cruises along swimmingly — then suddenly, life…
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