Being diagnosed with spinal muscular atrophy (SMA) 20-odd years ago was akin to a death sentence. But for the majority of my life with SMA, my health has been fairly stable. I’ve come to expect that, in the rare instances when I do get a cold, it will be…
Discussion
Managing a career, dating, and air travel for individuals with spinal muscular atrophy (SMA) comes down to three key tools: open communication, smart energy management, and proactive planning. These strategies were discussed during a recent webinar hosted by SMA News Today, where advocates living with the…
Discussion
In June, my parents and I huddled into our accessible van to head to the annual Cure SMA conference in Orlando, Florida. It’s always my most anticipated time of the year, filled with seeing friends, meeting new people, and spending late nights at the hotel lounge and by the…
Discussion
I have a really special and pretty large friendship caregiving team, which I write about a lot in this column. Because I live with SMA, I need plenty of help, and I am grateful for all the wonderful friends who do so much. Mostly, my caregivers are…
Discussion
The successful implementation of a spinal muscular atrophy (SMA) carrier screening program in southern China shows the “feasibility and clinical utility” of such a program in the country, researchers said. The program tested thousands of people, allowing couples at high risk of having a child with SMA to be…
Discussion
In spinal muscular atrophy (SMA), the death of nerve cells — which results in the progressive muscle weakness and wasting that characterize the rare disease — begins in wire-like nerve fibers known as axons, a new study from researchers in Scotland shows. The findings suggest that current SMA…
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