In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games were right up my alley. I loved everything to do with…

From being a child actor to a lawyer in the entertainment industry, Alexa Dectis, who has relied on a power wheelchair to get around since she was 2, has gone far. Dectis, diagnosed with spinal muscular atrophy (SMA) type 2 when she was 18 months old, was named…

My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in an…

For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved the process of concept to creation, the thought that went into the garments, what inspired the…

Treatment with Spinraza (nusinersen) modestly improved muscle strength and stabilized motor function for adults with spinal muscular atrophy (SMA) types 2 or 3, according to a study from Israel. The study, “Longer-term follow-up of nusinersen efficacy and safety in adult patients with spinal muscular atrophy…

April brought with it more than showers in the water department. Our son Matthew and his family visited our daughter and son-in-law, Katie and Paul, on Easter weekend. Besides the beach, they had access to a nearby swimming pool. As our granddaughter Clara, 6, dipped her toes into…