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 of…

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 Clinical…

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 that…

Taking Part in Adapted Sports Improves Mental Health, Study Finds

Among people with spinal muscular atrophy (SMA) and other neuromuscular disorders, participation in adapted sports is associated with greater self-esteem, lesser depression, and a better quality of life, a study shows. The study, “Psychosocial impact of sport activity in neuromuscular disorders,” was published in Neurological Sciences.

MDA Hosting Online Q&A on COVID-19 Today

The Muscular Dystrophy Association (MDA) is hosting an online Q&A session today to discuss the best ways that people with neuromuscular diseases might protect themselves during the COVID-19 pandemic. The 30-minute session can be accessed on the MDA’s Facebook page, and starts at 6 p.m. EST. People with…