I’m a lot of people’s favorite something. That’s not bragging, it’s just a statement of fact. Ask my mother who her favorite child is, or some of the nurses at my usual hospital’s neurology ward who their favorite patient is, or some of my friends who their favorite friend or…
Treatment with Evrysdi (risdiplam) may modestly improve arm function for adults with spinal muscular atrophy (SMA), a new study from the Czech Republic and Slovakia indicates. Findings suggest that adults with SMA generally have stable motor and lung function over three years of Evrysdi treatment. Evrysdi “was associated…
Discussion
My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our own pretend play world, where we could be spies, horse farmers, and baseball players; we…
Children with spinal muscular atrophy (SMA) often struggle to get a good night’s sleep — and their caregivers also commonly report feeling sleep-deprived, according to a new study. “Sleep problems have potentially critical consequences for children and are also to a great extent related to caregivers’ sleep. We therefore…
Children with spinal muscular atrophy (SMA) who start on a disease-modifying therapy (DMT) — four have been approved in the last decade — before developing symptoms are usually able to feed by mouth, but SMA patients who already have swallowing difficulties before beginning treatment often continue to have…
Discussion
I am honored to have the opportunity to share my journey as a mom to an extraordinary human being. My son, Brandon Johnson, has faced immeasurable odds and lives a life that reflects resiliency and strength of spirit. In my professional life, over the past 46 years, I have been…
Get regular updates to your inbox.
