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I credit my mother for my affinity for (most) things hair-raising. She loved thrillers. While her vision allowed, she was drawn to the TV shows “Forensic Files” and “Criminal Minds,” delighted to learn that our daughter, Katie, was also a fan. Halloween’s creepy stuff…

Continued treatment with apitegromab, designed to strengthen muscles, led to stabilization or improvement in measures of fatigue and life quality for children and young adults with types 2 and 3 spinal muscular atrophy (SMA), according to new data from the TOPAZ clinical trial. According to apitegromab’s developer…

You know when something is wrong, but you can’t put your finger on what, exactly, that is? The past week has been an exercise in expecting the unexpected. I woke up Wednesday morning to a weeks-early period. “Fine,” I thought. “I’m flexible. I can adapt. This is no big…

Diagnostic testing company Ambry Genetics has launched a reproductive health program to increase access to carrier and prenatal screening for genetic disorders such as spinal muscular atrophy (SMA). The Comprehensive Assessment Risk and Education (CARE) program seeks to enhance the availability of carrier screening and…

I love to go out and explore bits of the world with family and friends. Dinner at a restaurant, coffee dates, shopping trips, festivals, vacations — all of these are awesome activities. It takes some effort and teamwork to get my medical equipment out the door…

Children with spinal muscular atrophy (SMA) switching from Spinraza (nusinersen) to Evrysdi (risdiplam) are generally optimistic about the switch as are their caregivers, according to a new study. The report, “How children and caregivers viewed the change from nusinersen to risdiplam for treating…

Men with spinal and bulbar muscular atrophy (SBMA) had slower nerve impulses leading to their forearm muscles when their arms were exposed to cold temperatures, a small study reported. These slower impulses correlated with reduced hand grip strength, and were significantly longer in adults with muscle weakness at…

Many a think piece has been written about what Twitter, and social media in general, does to our brains. Experts have even weighed in on what doomscrolling, a term Merriam-Webster defines as “the tendency to continue to surf or scroll through bad news, even though that news is saddening,…

“Pneumonia! It’s been a few years. How’ve you been? Sorry to be blunt, but I’d rather you not stick around for too long since you’re a real pain in the butt.” Fortunately, my most recent encounter with my old acquaintance was relatively brief. I spent one night at the…

It all started with a little pink pill. I’m allergic to everything under the sun. Thanks to a complex, multistep treatment regimen, I more or less have my allergies under control. But there are days when not even my trusty Mucinex Sinus-Max nasal spray will do the trick.