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It can be fun to let our imaginations run wild with the idea of choosing a superpower. The possibilities are endless, practically begging to be explored by creative minds. Superpowers might be things of fiction, but I can’t help wondering how my real life might influence my answer. Could…

“You just have to get through one more procedure,” I told myself as I pierced my tongue with my teeth while a needle stung my back. Slow and steady, I tried to take deep breaths to calm my nerves and relieve the pain. But the monitor above me said…

More than a year of treatment with Spinraza (nusinersen) did not result in clinically meaningful changes in cognition for adults with spinal muscular atrophy (SMA), according to a recent study. While patients did not exhibit widespread cognitive deficits, abnormal performance in certain domains was observed. Scores across…

Given the hair-raising books and movies I favored growing up, you’d think I’d have uttered a scream at some point. Genuine screams, however, were reserved for roller coasters until my husband, Randy, became a football coach. Then I morphed into a maniac. Granted, I considered my high-decibel screams warranted…

Researchers have developed a new mouse model that exhibits the features of spinal muscular atrophy (SMA) with progressive myoclonic epilepsy, or SMA-PME — a rare type of the rare disorder characterized by seizures that typically start during childhood. The mice, which exhibited motor and sensory impairments, were found…

People-watching is one of my favorite things to do at Disney World. It’s a free and accessible activity, and it comes with more surprises than any of the hundreds of rides at the parks. Whereas “It’s a Small World” gets repetitive after a while, observing the public pitfalls…

As hopeful as I was when starting naturopathy, I didn’t actually expect anything to come of it. Desperate for relief and having tried everything else, I decided it was worth a shot. At the least, I could return to my doctor with the hopeless certainty of someone who…

Scientists at The Jackson Laboratory — a U.S.-based biomedical research nonprofit — were granted $22.8 million by the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), for a novel method to develop gene editing therapies for neurological disorders, including…

Current therapeutic approaches have helped to improve motor function in the majority of children with spinal muscular atrophy (SMA) type 1 in Spain, a study reports. The study, “Clinical and Functional Characteristics of a New Phenotype of SMA Type I among a National Sample of Spanish…

Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Surrounded by beeping machines, monitors, wires, and tubes, I had trouble feeling like anything more than a patient during my…