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 severe disability, I need help with literally everything. That isn’t a bad thing. It’s a truth that…
Discussion
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 likely to be hospitalized, require admission to an intensive care unit (ICU), and use…
Discussion
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, a sign that the rain would be easing up. It turned out to be the calm…
Discussion
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 office, including romantic relationships, careers, and travel.
Discussion
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 “improved processes and governance for communication and collaboration across registries [and]…
Discussion
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 treatments. That’s according to a new U.S. study, which found that results of tests of…
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