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 severe as that of some people I know, so I’ve never needed long-term treatment for…
Higher levels of the glial fibrillary acidic protein (GFAP) in the fluid around the brain and spinal cord are associated with a better clinical response to Spinraza (nusinersen) among people with spinal muscular atrophy (SMA), according to a recent study in Turkey. Researchers analyzed whether levels of proteins derived from…
Discussion
Since we’re now well into cold and flu season, there’s one subject that will be at the forefront of my mind for several months: to do everything in my power to not get sick. I think everyone with spinal muscular atrophy (SMA) can relate to the unmitigated fear associated…
Discussion
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, South Carolina, for a delightful family getaway left no calendar square unscathed. Due to…
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 to address the evolving needs of individuals living with SMA, and are deeply…
Discussion
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 family, and the weather in the South is usually at least 10 degrees warmer than it…
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