School is out in my area, and summer has officially started! Living with SMA means that my independence is made possible through a network of practical, daily support from friends in my community, and caregiving is woven into nearly every part of my life. My volunteer caregiving schedule…

Problems with swallowing, also called dysphagia, remain a concern for many children with spinal muscular atrophy (SMA) type 1 despite available treatments, a real-world study reports. Researchers examined swallowing in patients with SMA type 1 receiving disease-modifying therapies (DMTs). They found that…

I sometimes experience an unexpected blast into the past. For example, if the weather has just the right balance of sunshine and crispness, I’m back in elementary school, around Thanksgiving, playing chase with my brother and our visiting cousins around the schoolyard across the street or the alley next door,…

Blood levels of tiny cell-released particles called extracellular vesicles (EVs) could serve as a tool to track disease progression and treatment response in people with spinal muscular atrophy (SMA), a small study suggests. Researchers discovered that these microscopic particles, which carry cargo between cells, were elevated in untreated SMA…

I’m at a point in my life where I’m highly convinced I’m going to die single and a virgin. That may sound dramatic to some people, but for many disabled adults, it’s a thought that quietly lingers in the background more often than anyone realizes. We live…