One of the greatest experiences of my life is raising children and watching them grow. My husband, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. I have witnessed many beautiful moments in my parenting journey. In my…

The first step to figuring out the right equipment for someone with a neuromuscular disease like muscular dystrophy is to understand that person’s goals, environment, and changing needs, a pair of experts said. “There’s a lot of equipment out there,” said Katie Metheny, an occupational therapist based in the…

I’ve written previously about how those of us with facioscapulohumeral muscular dystrophy (FSHD) often adapt without even thinking about it to increasing weakness as a result of our disease progression. For me, the most recent example of this is the knee grab exercise. This may be an old, well-used…

A new gene therapy approach safely restored the production of emerin, the protein missing in people with X-linked Emery-Dreifuss muscular dystrophy (EDMD), in both a mouse model and human muscle cells, according to a study. Although the preclinical study could not assess the gene therapy’s impact on muscle function,…