The other day, I got my wheelchair stuck in a doorway. All I wanted to do was see the Christmas decorations at a local coffee shop. Perhaps even enjoy a nice cup of their matcha while quietly watching everything sparkle. Instead, I was wedged in the doorway, pushing my joystick…
Discussion
Thanksgiving and Christmas are holidays that make me grateful. I am thankful for the birth of my Lord and Savior, Jesus, and how he not only brought me through all the events of this year in one piece, but also made me triumphant in many areas. One of my favorite…
Discussion
The magic of theater is that it’s live. Despite having a script, cues, rehearsals, and anything else the cast and crew can use to achieve consistency, the live nature of theater means the production remains mutable. You can’t “lock in” scenes like you can with film. Plus, not only will…
Last month’s approval of Novartis‘ one-time gene therapy Itvisma (onasemnogene abeparvovec-brve) for people with spinal muscular atrophy (SMA) ages 2 and older is a milestone that “ushers in a new era of informed therapeutic choice,” according to Angela Lek, PhD, chief research officer at the Muscular…
Discussion
When I was 11 years old, I had pneumonia and spent the week before Christmas in the intensive care unit. Because I have SMA, my pulmonary functions are weaker, and when I get sick — even with a common cold — it can quickly become something much worse. I’ve…
A new review of studies from six countries reveals that incorporating spinal muscular atrophy (SMA) into newborn screening (NBS) programs yields clinical improvements and reduces healthcare spending, particularly when paired with presymptomatic treatment. “These results collectively indicate that NBS for SMA, when combined with presymptomatic treatment, is not only…
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