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Lately, I’ve been asking myself whether what I have right now is truly enough to carry me through the hard seasons. It comes as the New England Patriots are heading to the AFC championship game. For…
For babies diagnosed with spinal muscular atrophy (SMA) before birth, doctors may be able to plan an early delivery so the baby can start treatment within days instead of waiting for a full-term birth. In…
Spinal muscular atrophy (SMA) affects the nervous system — essentially, the body’s command center, where nerves transmit signals that coordinate actions, senses, and bodily functions — more profoundly than previously thought, a new study suggests.
When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as…
Last year sprinted to the finish line at breakneck speed. I couldn’t have stuffed much more into December’s calendar. Wrapping presents, finishing intense seasonal activities and mandatory year-end tasks, fulfilling copious obligations, and escaping to Charleston,…
The European Commission has approved a new high-dose regimen of Spinraza (nusinersen) for people with 5q spinal muscular atrophy (SMA). “We are proud to introduce the high dose regimen of SPINRAZA, which we have developed…
I recently returned home from a seven-week holiday at my parents’ house. It’s become my annual tradition, and for a lot of reasons. It gives me a good chunk of quality time with my…
I knew things would change when my mom retired. For one thing, there was going to be a whole third person hanging around our house; for most of my life, it was just my dad and…
A program that aims to simultaneously strengthen muscles needed for breathing and postural muscles in the trunk may benefit people with spinal muscular atrophy (SMA) more than a program that focuses only on breathing muscles, a…
A small molecule known as 10H-phenothiazine (PTZ) reduced the loss of motor neurons, the nerve cells lost in spinal muscular atrophy (SMA), in animal models of the disease. The treatment also rescued SMA-related changes in the…
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