Columns

Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug apitegromab is intended to target a protein in the bloodstream that inhibits muscle growth with the…

The weather can affect those of us with SMA in ways that many people wouldn’t think of. For example, I wish I could just enjoy looking out of the window as the snow falls, with everything I need to wait out a winter storm. But in my reality, ice,…

I learned my vision needed assistance in fifth grade. Although I unwittingly squinted at the chalkboard, my report cards never indicated a problem. I was a model student because I adored my teacher, Mrs. Chandler. I didn’t want to disappoint my teacher parents, either. They never needed to prod me…

Stephen King’s “The Shining” shows what happens when someone spends too much time cooped up indoors. Sure, supernatural forces provide the basis for the main character’s descent into madness, but a defining element of the novel is that it takes place in a remote hotel during winter snowstorms. I imagine…

It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I…

As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been spreading across the country. All I could do was roll my eyes. After the past several…

Empathy is often described as the ability to imagine yourself in another’s shoes, see the world through their eyes, and feel the weight of their experiences as if they were yours. But empathy is more than just a fleeting sense of understanding. It’s the heartbeat of human connections. It bridges…

I’ve mentioned before that I don’t always know what I’ll cover in this column when the time comes. It sure eases the anxiety level when I have a clue, though. Our SMA assignment with our third baby, Jeffrey, led me to appreciate “angel intervention” in all facets of…

Let me explain something called “pee math.” I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before…

Four must be my unlucky number, because the worst years of my life have all ended in four: 2014, the year of major depression, and 2024, the year of suck. (I’m sure 2004 was bad, too, given that I’d just undergone a spinal fusion the year before. Thankfully, I don’t…