Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that. I’m currently addressing two main issues: frequent illness and a lack of nursing coverage.
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First in a series. Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects. You’ll find Alexa Dectis, the child actor turned entertainment lawyer and one…
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if I drive a car. It’s a valid question because many people with disabilities do…
Measuring the levels of the survival motor neuron (SMN) protein in blood cells may help track spinal muscular atrophy (SMA) patients’ response to Evrysdi (risdiplam), a study from Japan found. Patients taking the drug showed a significant increase in blood levels of SMN after one month of therapy. SMN…
I’ve long dreamed of visiting the Georgia Aquarium in Atlanta to see their famed whale sharks. Something about the gigantic yet peaceful sea creatures tugs at my soul in a way that made me crave seeing them up close. Eventually, that dream became a reality as well as…
An experimental oral combination of two therapies eased motor symptoms and prolonged survival in a mouse model of spinal muscular atrophy (SMA), a study shows. The study, “The effect of coadministration of D156844 and AR42 (REC-2282) on the survival and motor phenotype of mice with spinal muscular atrophy,”…
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