How the Winter Olympics can remind us of the power of imagination
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…
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Children with SMA, their caregivers struggle to get quality sleep: Study
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…
For SMA children, early start to therapy may help with swallowing, eating
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,…
Guest Voice: Helping my son live his best life with SMA is an honor
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…
Blood biomarker ratio may track Spinraza response in SMA children
The blood creatinine-to-cystatin-c ratio (CCR), an indicator of muscle mass and strength, may be a biomarker of treatment response in children with spinal muscular atrophy (SMA), a study in China shows. Increases in the ratio were significantly…
Would it be a ‘tale as old as time’ if Belle were a person with a disability?
“Do you remember when Dad took us kite flying?” I asked my brother, Gabriel. We were on a train ride home from the Sands Theatre, where we’d just seen an…
From teacher, to parent, to SMA parent, to grandparent
My goal in college was to become a special education teacher. I had a dream work-study job at a nearby elementary school, assisting in two special ed classrooms. My career plan derailed slightly when I married, moved, and…
On a special night, I’m heading back to dance, cheer, and yes, shine
For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim…
Nerve signals can help track Spinraza response in SMA kids: Study
The strength of nerve signals to muscles may serve as a marker of disease severity, and as a means to track responses to Spinraza (nusinersen) treatment, in children with spinal muscular atrophy (SMA), the…
High-dose Spinraza safely boosts motor function in SMA children: Data
Treatment with a high-dose regimen of Spinraza (nusinersen) was shown to safely improve motor function in children with spinal muscular atrophy (SMA) in the Phase 2/3 DEVOTE clinical trial. Most patients who switched from the…
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