Author Archives: Marisa Wexler MS

Disparities Found in Parents, Children’s Perceptions of SMA

Perceptions about illness often don’t line up between children with spinal muscular atrophy (SMA) and their parents, with mothers and fathers often perceiving disease severity as worse than their children do, according to a recent study. Importantly, children’s perceptions of their disease are closely associated with their quality…

Cure SMA Details Its ‘Clinical Trial Readiness Program’

A readiness program to help clinical trial sites prepare to run spinal muscular atrophy (SMA) studies has been established by Cure SMA in collaboration with the pharmaceutical industry, other patient advocacy groups, and research institutes. The program is described in a position statement, “The SMA…

Interviews Probe How Unaffected Siblings Learn Genetic Implications of SMA

Siblings of people with spinal muscular atrophy (SMA) who do not have the disease themselves tend to learn about it gradually over time from both their parents and external sources, a study shows. Findings from interviews with families affected by SMA highlight the importance of parents discussing the…

Too Little Known About Care Needs of Adults with SMA, Study Says

A better understanding of the needs of adults with spinal muscular atrophy (SMA), best ensuring for their mental and social — as well as physical — well-being, is necessary to guide future research, care recommendations, and policy decisions, a review study states. Among its findings was strong support for treatments…