Parents of children and young adults with spinal muscular atrophy (SMA) reported significant unmet needs, including respite care, mental health support, and community connection, according to an interview study. Three-quarters of the parents also expressed interest in developing a tailored parenting program to help them better care for their…

It’s been almost four months since my husband, Randy, and I made a hasty run to Charleston, South Carolina. Our mission was to adopt a dog our daughter, Katie, had found at a nearby rescue. This frequent mama dog named Ellie piqued the spark missing since the loss of…

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 types 2, 3, and 4. “These results add to the limited database…

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 very different. We can do quite a lot, actually! From swimming to horseback riding,…

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 future work using home-based monitoring in larger SBMA cohorts,” researchers wrote. Despite…