Columns

I woke up to a text from my friend Sherry: “Babe, you should try this new accessibility tool that just came out. It might help you game!” When it comes to video games, Sherry is the smartest person I know. She freelances as a journalist in the gaming…

People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that warrant total privacy, such as bathing, dressing, and toileting, require…

Although I’m finding it hard to believe, this month marks 10 years since I graduated college. It feels like yesterday that I was excitedly driving across a stage to receive my diploma. With five long years of hard work in my rearview mirror, I couldn’t help but feel…

The Muscular Dystrophy Association (MDA) has opened the MDA Gene Therapy Support Network — a new program it’s dubbed GTx — to aid and educate families living with spinal muscular atrophy (SMA) or other neuromuscular diseases (NMDs) who may be considering a gene therapy as part…

Looking back, I see how I’ve always had an inclination to write a lot. Even in high school 25 years ago, when a test question required me to write a paragraph or two, I would write pages. This was back when I had to use a scribe to write…

I celebrated a birthday recently, kicking off the final year of my 60s in memorable fashion. As I got ready at home to join our grandson, James, for a Mother’s Day breakfast in his class at school, I opened the bathroom door. Sprawled out over the entire…

On May 2, members of the Writers Guild of America (WGA) held their first strike since 2007-2008. The WGA is a joint partnership of labor unions on the East and West coasts, each composed of writers in film, television, radio, and online media. When writers and the studios…

Children with spinal muscular atrophy (SMA) who are treated with Zolgensma (onasemnogene abeparvovec-xioi) tend to have more dramatic gains in motor function when it’s given earlier in the course of disease, a new study reports. The findings suggest the best improvements are seen among babies treated in…

Alterations to the composition of intestinal microbes — called the gut microbiome — in spinal muscular atrophy (SMA) patients may contribute to certain metabolic disorders that are commonly seen in patients, according to a recent study. Scientists identified a number of altered gut bacteria in children with SMA…

A second-generation gene therapy, administered directly into the brain, led to faster and more pronounced improvements on motor function in a mouse model of spinal muscular atrophy (SMA) compared with a benchmark vector similar to the approved gene therapy Zolgensma (onasemnogene abeparvovec-xioi). That’s according to new data…