Spinal muscular atrophy (SMA) is more common in wealthier countries across the globe, likely reflecting increased access to diagnostic tools, newborn screening, and modern treatments. That higher prevalence — the total proportion of a population…
Unintentionally, last year, most of my immediate family bought me Christmas gifts with the same theme. My brother, Gabriel, got me a handmade blue-and-white scarf from China. Mom got me a sheer-ish white shawl. My…
On a recent Saturday morning, the dryer wouldn’t turn on. The washer held a big load of washed towels. As our recently adopted dog, Ellie, was still in unexpected heat, laundry duty was…
There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2,…
The Apple TV series “Shrinking” features an ensemble of messy characters. Lead protagonist Jimmy (played by Jason Segel) is a widower who struggles to care for his teenage daughter, Alice (Lukita Maxwell). As a therapist, he…
My parents were the first to notice that I had some art talent. Spinal muscular atrophy (SMA) wasn’t well understood when I was a child, and in an era before iPads, cellphones, and travel…
A European Medicines Agency (EMA) panel recommended that the one-time gene therapy Itvisma (onasemnogene abeparvovec-brve) be approved for patients with spinal muscular atrophy (SMA) ages 2 and older. The Committee for Medicinal Products for Human Use (CHMP)…
Newborn screening (NBS) for spinal muscular atrophy (SMA) is widely supported among families whose babies were screened, SMA families and adults living with the disease, healthcare professionals, and the public, according to a large U.K. survey. The potential…
I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while…
For a video games journalist, I haven’t played many video games recently. Mostly, the absence of gaming in my life isn’t my fault. My laptop is almost four years old, and it’s quite determined to…
Get regular updates to your inbox.