Some of my earliest memories are of my mom helping me get dressed up for ballet. Nothing says prima ballerina vibes like a leotard, some tights, and chunky 80s-style leg warmers. I was 4 years old, and…
Another day, another trek to Gillette Children’s Specialty Healthcare. This time, though, it’s for something I’ve never done before: a cortisone injection in my right hip. For all I’ve written about chronic pain over the…
The U.S. Food and Drug Administration (FDA) has once again found problems at a manufacturing facility that was included on Scholar Rock‘s application seeking approval of apitegromab, its experimental muscle-strengthening agent for spinal…
I promise I’m not being negative or dramatic when I say I can’t do anything on my own, and I don’t lack confidence in myself, either. It’s just a fact that with my…
Children with spinal muscular atrophy (SMA) have a higher risk than their peers in the general population of developing severe respiratory syncytial virus (RSV) infections, a nationwide study from Taiwan found. SMA kids were more…
Last Wednesday evening, a double rainbow popped up across the road. We’d had rain to some extent every afternoon and night. The rainbow provided a beautiful bit of calm and was, we hoped,…
In a few weeks, SMA News Today will host a free webinar exploring aspects of life with spinal muscular atrophy (SMA) that are rarely discussed in the doctor’s…
Registry studies can provide a valuable glimpse into how outcomes are evolving in rare diseases such as spinal muscular atrophy (SMA), but a lack of complete data can limit their usefulness, a study found. The researchers called for…
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In infants diagnosed via newborn screening with spinal muscular atrophy (SMA), measures of nerve function may be a useful way to quickly evaluate disease activity and track how these young patients respond to SMA…
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