I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable…
When it comes to sleep studies, I mainly remember orange juice. Don’t ask me why. I was young then, around 8 or 9, so I have to assume the technicians were trying to bribe me or something. My…
The antipsychotic medication haloperidol may help treat spinal muscular atrophy (SMA) by increasing SMN protein levels and enhancing protective effects in nerve cells, a study found. Haloperidol boosted nerve cell survival, reduced neuroinflammation, and improved motor function…
“Where are the cartoons?” I jokingly asked my mom while “Sherri,” the daytime talk show, played on a television above me. She chuckled as I scanned the waiting room, taking it all in. There are moments in…
A review study found that the neuromuscular junction (NMJ), the site where nerves connect to the muscles they control, fails to mature normally soon after birth in people with spinal muscular atrophy (SMA), leaving it structurally underdeveloped…
The spring of 1997 arrived with a bang. Initially stunned at the revelation of an unplanned pregnancy, my husband, Randy, and I warmed up quickly to the baby idea and considered ourselves as prepared as possible.
Treatment with Evrysdi (risdiplam) improved motor function and quality of life in children and adults with spinal muscular atrophy (SMA), a real-world study in Hong Kong shows. The findings, from 34 patients followed for up…
In my life with SMA, my favorite thing to talk and write about is my caregiver community. They are truly exceptional and amazing people who faithfully show up, step up when my needs change, and…
In episode 157, host Kevin Schaefer talks with Delphine Andrews from Durham, North Carolina. Delphine is a life coach and disability advocate living with SMA. She talks with Kevin about her journey toward accepting herself, advocating for…
Far-field potentials (FFPs), electrical signals recorded with surface electrodes after nerve stimulation, may help track disease progression in people with spinal muscular atrophy (SMA), a study suggests. The strength of these signals, or FFP amplitude, was significantly…
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