Community Perspectives

Treatment with Evrysdi (risdiplam) generally stabilized motor and respiratory function for up to 2.5 years in adults with spinal muscular atrophy (SMA), according to a real-world study in Slovenia. The study included 11 adults with SMA…

As 3-year-old Evie Bradford splashes in a shallow pool, her family cheers when she dog-paddles with all four limbs, her head bobbing above water. Less than a year ago, this little girl with spinal muscular atrophy (SMA) type 1 loved being in the water, but lay passively while…

When people think about exercise, they often picture movement that is visible, measurable, and easy to quantify, such as miles walked or weight lifted. But for people with SMA, staying fit can look…

Using wearable sensors during clinical tests may help doctors objectively measure changes in movement ability for people with spinal bulbar muscular atrophy (SBMA), a study reports. “These findings support incorporating wearable sensors into clinic assessments and encourage…

New treatments for spinal muscular atrophy (SMA) are helping many people live longer, fuller lives, changing what it means to grow up and grow older with the condition. SMA is now being managed across all stages of life, shifting care from palliative support toward long-term health and independence. Brian…

The U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to salanersen, a new, more potent Biogen treatment for spinal muscular atrophy (SMA) that’s now in late-stage testing. The treatment candidate, being evaluated…

With SMA, I work hard to take advantage of every opportunity that comes my way. But what if I’m missing something? What if there are opportunities that are within my grasp, but I’m not…

Muscle weakness and tightening associated with spinal muscular atrophy (SMA) can gradually affect how joints move and function. One complication that may develop over time is contractures, which occur when muscles and surrounding tissues tighten, limiting joint mobility. Contractures can influence joint flexibility, posture, comfort, and independence. Although contractures…

I’d be lying if I said I wouldn’t sell my soul for money. In a way, that’s what my job as a professional disability advocate and writer is: Mining my life as a resource for content to…

A combination of genetic testing approaches enabled researchers in Spain to more accurately characterize complex genetic changes that may help explain differences in disease severity in spinal muscular atrophy (SMA), according to a new study. The findings suggest…