Tori highlights the diverse and nuanced experiences of living with spinal muscular atrophy (SMA), emphasizing that there is much more to life than the medical aspects of the diagnosis. The post Tori Hunter: How her life looks…
This segment explores the challenges of dating with SMA, providing language tools to comfortably frame medical details and communicate needs to new partners with confidence. The post Segment Two: Relationships & Disclosure appeared first on SMA News Today.
This segment highlights strategies for managing workplace fatigue, navigating the accommodation request process, and using self-advocacy scripts to establish a sustainable work environment. The post Segment One: Career & Accommodations with SMA appeared first on SMA News Today.
The successful implementation of a spinal muscular atrophy (SMA) carrier screening program in southern China shows the “feasibility and clinical utility” of such a program in the country, researchers said. The program tested thousands of people, allowing…
The post Rarely Speaking: SMA Beyond the Clinic Webinar appeared first on SMA News Today.
In spinal muscular atrophy (SMA), the death of nerve cells — which results in the progressive muscle weakness and wasting that characterize the rare disease — begins in wire-like nerve fibers known as axons,…
There are often movies from our adolescent years that we continue rewatching no matter how old we get. They feel a bit like being wrapped up in a cozy blanket. I was definitely a Disney kid, so…
A generous neighbor recently urged me to pick tomatoes from his garden during his extended absence. Last Thursday, I obliged. Helen Baldwin plays “sorta farmer” after picking tomatoes at a neighbor’s farm. (Photo by Helen Baldwin)…
Evrysdi (risdiplam) may improve nighttime breathing in adults with spinal muscular atrophy (SMA), a small, real-world study in Italy found. After 12 months on Evrysdi, study participants experienced fewer episodes of breathing that stopped or…
There are moments when I forget that I have spinal muscular atrophy (SMA). Does that surprise you? It surprises me. It’s not as if this is a new diagnosis that I’m…
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