“You must have dropped the baby.” That sentence was one of the many knives flung at my mother’s chest when I was diagnosed with SMA. She was 24, barely an adult. I was a difficult pregnancy, born a full month before I was due. My birth would’ve been even…

Three months ago, my husband, Randy, and I adopted Ellie, a mama dog who had been at the rescue for four months. She arrived with six puppies, tending to another litter after hers were adopted. “Tending” might be a stretch. When we saw Ellie, her interim miniature charges…

Evidence-based guidelines have been developed for newborn screening (NBS), diagnosis, and early management of spinal muscular atrophy (SMA) in Australia and New Zealand to help ensure that all affected children are identified and treated as early as possible. “The study informs best practice within a new diagnostic and therapeutic…

Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving is a strange mix of the deeply practical and the deeply personal — it’s as much…

Children with spinal muscular atrophy (SMA) who were diagnosed through newborn screening and treated early had better long-term independence and daily functioning, especially when supported by multidisciplinary care at home and at school, according to a real-world study from Australia. “Multidisciplinary care is important to meet the changing and…