For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study, or running a nonprofit organization as an adult, I have always been committed to making…

To better understand and address barriers to the implementation of newborn screening across Canada for spinal muscular atrophy (SMA), Muscular Dystrophy Canada (MDC) has awarded more than $700,000 to projects in three provinces. This is the first round of awards to come from a collaboration between MDC…

The Olympic Games in Tokyo are happening right now, which makes me think about how those of us with SMA are athletes in our own special way. How do we win against the opposing team of our symptoms? We must have high amounts of endurance, the will to overcome…

I had Mrs. Ruby Miner for spelling in the seventh grade. Besides spelling words, we defined, pronounced, and wrote them neatly. Stepping into Room 217 usually brought on a slight spell of jitters, even for this decent speller. I can only imagine the palpitations had I not been an…

Spinraza (nusinersen), a treatment for spinal muscular atrophy (SMA) that helps improve motor function, was found to also improve lung function in a 10-year-old girl with advanced SMA type 2, a case report says. The report, “Nusinersen improved respiratory function in spinal muscular atrophy type 2,”…

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…