While effective treatment is lengthening life and improving its quality, children with spinal muscular atrophy (SMA) type 1 often have abnormal spinal curvatures like scoliosis that require long-term care, a study highlights. “Novel therapies have made this [SMA] a treatable condition, resulting in increased life expectancy,” the researchers, all…

It was another appointment in an appointment-packed January. My hopes weren’t particularly high, but no one will ever accuse me of being a less-than-perfect patient, so I braved the cold bite of the new year. I was seeing an ear, nose, and throat (ENT) specialist based out of…

I didn’t expect to find myself participating in a Valentine’s Day card exchange as an adult. I thought such festivities were (sadly) reserved for kids. But then a friend shared a Facebook post last year inviting people to join a card exchange for anyone with SMA and their…

The U.S. Food and Drug Administration (FDA) has approved a new tablet formulation of Evrysdi (risdiplam), an approved oral treatment for spinal muscular atrophy (SMA). “Evrysdi has robust potential to modify the SMA disease trajectory, and has already been used to treat thousands of patients to date,” Levi Garraway, MD,…

My husband, Randy, and I moved our family to the North Carolina mountains in the final hours of 1995. Adventures in our old farmhouse commenced immediately. We considered a newsworthy blizzard and the escape of two flying squirrels from the wall into the dining room ample excitement for a long…