At the time I applied to be a columnist for SMA News Today, I knew just one piece of career advice: what you do in your personal life matters — especially if you’re a volunteer for anything. I was 19 when I received that advice. I had no formal…

Not all healthy children acquire full feeding skills by 2 years, according to a study that applied an instrument called DySMA — which assesses swallowing in infants and children with spinal muscular atrophy (SMA) who are undergoing treatment — to healthy children in a study to enable more…

Author’s note: I wrote most of this column on my phone while getting an atypical mole removed. If you wondered why I disappeared from social media, it’s because I’ve been busy crossing things off my medical bucket list, like getting shot up with lidocaine and watching a surgeon suture my…

Motor improvements in adults with spinal muscular atrophy (SMA) treated with Spinraza (nusinersen) paralleled a boost in the strength and duration of electrical impulses along nerves that supply the muscles, a study shows. In an SMA mouse model, Spinraza restored dormant motor neurons, the nerve cells that aid…

Testing patient DNA with advanced methods like HapSMA — which can “[analyze] … SMN and its surrounding genes” — can reveal otherwise undetectable genetic changes, such as gene conversion, that affect how severe spinal muscular atrophy (SMA) is, according to a study by researchers in the Netherlands. These novel…