“Spinal muscular atrophy golf tournament,” I spoke into my voice-to-text software. It was late at night, and I was physically drained. As a result, I knew my speech wouldn’t be very articulate. Nevertheless, I persisted in trying to accomplish some of my tasks for my nonprofit’s upcoming charity golf…
A home-based respiratory physiotherapy program focused on breathing exercises and airway clearance techniques can significantly improve quality of life for young people with spinal muscular atrophy (SMA) who are receiving treatment with Spinraza (nusinersen), a small study suggests. Data showed that lung function among the study’s participants remained…
Abe Homer’s entry into healthcare gaming technology began at Children’s Hospital Colorado, where he met a young man with advanced spinal muscular atrophy (SMA). “He was a young man in his mid-20s, who was in a pretty advanced stage of SMA at that point, where he could only…
Discussion
By the time I was 19, I believed I had escaped my reproductive cycle. In fact, I had developed a superiority complex about it. While my friends complained about cramps and cravings, I laughed in their faces. It’s not like I was reading studies on young women with…
Scholar Rock has resubmitted its application seeking approval in the U.S. of its muscle-strengthening agent apitegromab — rejected last year due to manufacturing issues — for the treatment of children and adults with spinal muscular atrophy (SMA). The drug developer said it expects the U.S. Food and…
Discussion
A sick feeling sank like a rock in my stomach. My wheelchair would not fit in the airplane cargo hold, the airline employee told me. My only options were to refund our tickets or reroute us through another airline. My caregiver and I sat there, surrounded by our carry-on bags…
Get regular updates to your inbox.
