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…
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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,”…
I was born on an Air Force base in Tacoma, Washington, but I grew up in Fort Worth, Texas. Texas was a wonderful place despite the chiggers, mosquitoes, and traffic. It was also oppressively hot in the summer, when only ice-cold watermelon, iced tea, ice cream, and Mexican food sounded…
“What are we making for dinner today?” my friend asks as we head to my kitchen. I love when she says “we,” because she knows I like to be an active participant in this process. It isn’t just her making something for me; it’s both of us making something together.
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