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. “The drug likely won’t be effective on you. You’re in your 20s, and you’ve deteriorated to the point where you…
When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put rods in my spine. Though my scoliosis was severe, my orthopedist hesitated at the idea…
For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but as…
“Hey, buddy, don’t get a speeding ticket!” “When was his last X-ray?” “Oh, wow, you work!” For whatever reason, society loves to infantilize disabled people. It’s practically a hobby for some people, be they medical professionals or middle-aged pedestrians looking to test their comedy skills when they see a wheelchair…
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…
