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Living with SMA entails so much more than physical challenges and caregiver shortages. Our lives are much fuller and richer than that. The riches are in our day-to-day experiences, as well as the wisdom and maturity that SMA bestows upon us. This often results in other qualities, such as resourcefulness and determination, which are necessary […] The post Living with SMA requires resourcefulness…
“Did you tell your siblings my medication costs about $1,000 SGD [$783] per day, before subsidies?” I texted my dad a couple of months back. It had been years since his elder brother and sister had seen me. As fate would have it, I was due for phenol and steroid injections to treat chronic pain […] The post We fought for access to Evrysdi, and now we’re fighting to keep it appeared first on SMA…
Infants diagnosed with spinal muscular atrophy (SMA) type 1 through newborn screening programs (NBS) and treated early with Spinraza (nusinersen) showed better survival, motor function, milestone achievement, and feeding and breathing independence than infants who began treatment after symptoms appeared, a real-world study in Turkey found. The nationwide study’s findings demonstrate that “timing…
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 I wasn’t actually going to a ballet lesson; I was going to my weekly physical therapy appointment. But […] The post Finding joy in physical therapy and strength through creative play appeared first…
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 years, I don’t think I fully understood how debilitating it can be until just recently. It takes up space in every area […] The post I always forget I have medical trauma until…
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 muscular atrophy (SMA). In light of the continued issues at the facility, Scholar Rock said it will remove that facility from its […] The post Scholar Rock shifts…
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 demands to be acknowledged and […] The post I can’t do anything on my own, but I can accomplish much with others appeared first on SMA…
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 ventilatory support for breathing, the study […] The post Children with SMA face…
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 before the storm. The rain began […] The post A double rainbow, a flash flood, and memories of different kinds of storms appeared first on SMA…
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. The webinar, taking place Aug. 25 at 1 p.m. ET, is titled “Rarely Speaking: SMA Beyond the Clinic (Real patient voices. […] The post SMA webinar to explore relationships,…
