My husband, Randy, is a beekeeper. I helped him with the bees until an unfortunate rash from a bee sting on my forehead landed me in the emergency room. My dramatic predicament likely stemmed from the combination of the bee’s momentum as she zoomed to the…

At every briefing before their shift, the nurses at my local children’s hospital would glance at me with amusement. As a child, I was often in the hospital for respiratory issues, and I had acquired a reputation. Not for my SMA, mind you, but for the one request I…

Children with spinal muscular atrophy (SMA) who have spine deformities or weak trunk muscles are more likely than others to have substantial limits to functional abilities and life activities, a study in patients ages 6 months to 15 years reported. Strengthening trunk muscles through regular exercise and physical therapy…

My local clinic isn’t actually local. Boasting neighbors like IKEA and the Midwest tourist trap that is the Mall of America, my clinic is a 20-minute drive — one way. I could take the moderately more scenic route if I didn’t have a penchant for running late, but I…

Roche and its subsidiary Genentech are launching a Phase 2/3 clinical trial to evaluate the safety and efficacy of GYM329 (RO7204239), an investigational anti-myostatin antibody, in combination with Evrysdi (risdiplam) in children with spinal muscular atrophy (SMA). The MANATEE trial has two parts. In part one, 36…

Flying can be an ordeal for many people with disabilities who rely on wheelchairs to get from point A to point B. Sometimes disabled travelers get to their destination only to realize their wheelchair or scooter is broken or missing. In 2019, the year after airlines were required to release…

A little while ago, I went from using one nursing agency to using three. The change allowed me to find enough nurses to sustain the care I need with spinal muscular atrophy (SMA), and it taught me an important lesson about when to ask for help…