Striving for a longer period of stability with my home nursing staff
At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse…
Community Perspectives
MDA 2026: Study sheds light on how SMA affects spinal cord development
Mutations that cause spinal muscular atrophy (SMA) disrupt the development of spinal cord cells, leading to fewer nerve cells in early development, according to a new study in cell models. The findings highlight potential…
Caring for students, a baby with SMA, and pets who need ‘a little extra’
As a college freshman pursuing a degree in special education, I assisted in two nearby elementary classrooms. The students all had moderate cognitive challenges. I remember a few even now: Roger, with his…
MDA 2026: Newborn screening helps infants with SMA start treatment sooner
Genetic screening for spinal muscular atrophy (SMA) in newborns may allow treatment to begin earlier, which could help support motor development, a study suggests. This “adds to the evidence that [newborn screening] for SMA is…
MDA 2026: Keynote speaker to MDA community: ‘Your voice is powerful’
At this year’s Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, researchers and clinicians are talking about the central role of patients, families, and caregivers in driving change for people living with neuromuscular diseases. Bionews,…
Even with all my tools, friends are the best adaptive gear
As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased,…
My pitch for incorporating SMA into ‘The Pitt’
Like many pop culture enthusiasts, I currently devote my Thursday nights to the HBO Max series “The Pitt.” Hailed as the most realistic medical drama on TV, the show follows an emergency department crew in a Pittsburgh…
MDA 2026: Apitegromab may boost motor function for people with SMA
Apitegromab, a muscle-strengthening therapy for spinal muscular atrophy (SMA), helped improve motor function in a new analysis of Phase 3 trial data, with the greatest gains seen in people who started treatment earlier. In…
MDA 2026: Trio of trials now testing Spinraza successor salanersen for SMA
Biogen has launched a trio of trials to test its new drug candidate for spinal muscular atrophy (SMA), salanersen, which aims to be a more convenient successor to the company’s approved SMA therapy…
Spinraza treatment improves motor function for adults with SMA: Study
Treatment with Spinraza (nusinersen) led to sustained improvements in motor function in adults with spinal muscular atrophy (SMA), and showed a manageable safety profile, according to a nationwide study in South Korea. Among 19 adults, researchers…