“Alexa, turn off the alarm.” “OK. Good morning, Connie. Would you like to hear an inspirational quote?” “Sure, Alexa. Go for it.” “All right. ‘There is no elevator to success. You have to take the stairs.'” “But Alexa, I’m in a wheelchair.” “I cannot help you with that.” As a…
Discussion
Muscle regeneration, the benefits of a specialized diet, physiotherapy, and assistive technologies are among top priorities for spinal muscular atrophy (SMA) research identified by patients, caregivers, and healthcare professionals from 22 countries in Europe. The top 10 priorities, developed through a series of surveys and a workshop, were published…
Discussion
The brain has long been thought of as a singular organ, but a new study shows that the front and back parts of the brain actually develop completely independently of each other. This discovery may have key implications for research into diseases like spinal muscular atrophy (SMA), which affects…
Discussion
A smiling stranger was quickly approaching us in the line to order our food, and she looked intent on talking to me. I didn’t recognize her. Had I forgotten who she was? I shouldn’t have worried. We didn’t know each other, and what followed was the normal, cringeworthy kind of…
Discussion
Throughout my life, I’ve experienced a certain kind of loneliness that comes from being surrounded by people. Conversations are happening all around me, and laughter fills the room. Everyone seems to be connected to one another, but I still feel invisible. Let’s face it, though. There’s nothing invisible about living…
Discussion
When I was born 31 years ago, spinal muscular atrophy (SMA) was a very different disease than it is today. There were no approved treatments. No gene therapy. No medication designed to slow its progression. For those of us born before the era of SMA treatments,…
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