Columns

When I was in middle school, I became acquainted with Ponyboy, Sodapop, Johnny Cade, and the other “Greaser” boys from the pages of “The Outsiders.” Since its publication in 1967, S.E. Hinton’s seminal novel has continued to resonate with generations of teenagers and young adults from all…

My dad and I have a long-standing tradition of rewatching old TV series. We’ve binged everything, including “Merlin,” “Stargate SG-1,” and “Star Wars Rebels,” over the years. Right now, we’re savoring every single episode of “Agents of S.H.I.E.L.D.” for the third time. “Agents of S.H.I.E.L.D.” premiered in…

Treatment with Evrysdi (risdiplam) in spinal muscular atrophy (SMA) patients who previously received other therapies was found to safely stabilize motor function and lead to slight improvements in arm function, new clinical trial data show. These results occurred “irrespective of previous treatment,” the researchers wrote, adding that…

My feeding tube became a part of my life amid a series of illnesses that required hospitalization when I was 13. I’d lost a dangerous amount of weight as my body burned through every available resource in an attempt to fight off infections. I was…

Whenever I think about how I started driving my wheelchair at 3 years old, I always wonder, “Whose great idea was that?” I accidentally crashed into furniture. I made plenty of dents in the walls learning how to navigate my new set of wheels. I even accidentally knocked down…

In the North Carolina mountains, spring signifies random weather: gorgeous blue skies, rain, wind, thunder, snow, and freeze warnings — sometimes all on the same day. Buds and blossoms are exploding, and the bees are happy. We noticed the annual duck visitation in the pond and…

Twin girls with type 0 spinal muscular atrophy (SMA) — the most severe form of the disease, which usually leads to death in the first months of life — are alive nearly two years after receiving early treatment with the gene therapy Zolgensma (onasemnogene abeparvovec-xioi), according to…

The 2014 film “Boyhood” caught the attention of audiences and critics upon its release for its wildly experimental approach. Writer-director Richard Linklater spent 12 years making the movie, following the main character, Mason, from elementary school until he went away to college. Linklater used the…

GenQA is asking people with spinal muscular atrophy (SMA) and their families in the U.K. to donate a small blood sample that will help the company determine if newborn screening tests are accurate and reliable. The U.K.-based company, operated by the Oxford University NHS Foundation Trust, provides…

As humans, we so often want everything to fit into tidy little boxes with labels that clearly identify the contents. But while we may be able to draw a few parallels, life isn’t exactly like organizing a storage closet. It’s more complicated than that. That knowledge doesn’t always stop…