Community Perspectives

An infant with spinal muscular atrophy (SMA) type 1 and neutropenia was successfully treated with with Zolgensma (onasemnogene abeparvovec-xioi), according to a case report. Neutropenia, which refers to low levels of immune cells called neutrophils, increases…

Anyone can experience ironic twists and turns in life, and those of us with SMA are no exception. In my previous column, I wrote about how my mom and one of my day…

I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me what it’s like to be…

One of my favorite things about springtime is the return of the local bird life, especially the songbirds. While certain species stay through the winter, the warmer weather brings forth a flurry of feathers as both year-round residents…

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. I hadn’t meant to fall asleep. “I’m…

The best sitcoms capture the chaos and unpredictability of everyday life. In the new Apple TV+ series “The Studio,” co-creator and star Seth Rogen plays Matt Remick, a disgruntled movie executive who lands his dream job…

When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping the next doorway isn’t too…

Now that I’ve been living in my new house for a month, I better understand what I love about it. In my last house, where we’d lived since I was 13, I had my own…

Last in a series. Read parts one and two.  I bought shoes I wasn’t sure I’d wear. That seems like a trivial statement, I know. Except the shoes cost 119 SGD ($89) including shipping, and…