An invitation to the community to experience joy together
Have you ever solved the world’s problems? I have. Well, sort of. That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA…
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SMA Europe online tool helps patients find clinical trials
SMA Europe has launched an online tool designed to help patients, doctors, and others in the spinal muscular atrophy (SMA) community more easily explore ongoing clinical trials across Europe and worldwide. The organization said it aims…
Video game may boost physical activity in children with SMA
The “Tales from the Magic Keep” exergame — a video game that uses body movements to promote physical activity — proved to be a feasible and engaging home-based tool for children and adolescents with spinal muscular…
Why actors with SMA deserve greater media representation, part 2
Last in a series. Read part one. “How are you feeling today, Sherry?” my director asked. We were about to rehearse for a play we’re working on. I’m still new to performing, and SMA makes…
More than moral support: A power wheelchair user’s race victory
Last week, I ran 4 miles in 50 minutes. “Big deal,” you might say. “You ride in a power wheelchair that can go 6 miles per hour.” All very true. Because I have SMA and cannot…
Guest Voice: Tempering expectations and keeping hope alive
For much of the time, the reality for those of us living with a chronic condition like SMA entails having something dangled in front of our faces, just out of reach — which isn’t challenging to do, considering…
Specially designed back brace helps ease scoliosis in SMA children
Using a specially designed back brace in addition to taking part in physical therapy may work best to reduce abnormal spine curvature, or scoliosis, in children with spinal muscular atrophy (SMA) type 1, a…
A magazine article was my family’s lifeline during my SMA diagnosis
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness.
My experience can teach others about home health nursing
Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in…
PROTAC therapy shows promise for SBMA, study finds
ARD-1676, a medication that works by tagging toxic proteins for destruction in cells, promotes clearance of the androgen receptor (AR) protein, which is faulty and clumps in spinal and bulbar muscular atrophy (SBMA), a study found. Earlier approaches…