Mary Chapman, features writer —

Development of an exoskeleton suit to help those living with progressive neuromuscular conditions that affect their upper-body movement will advance due to a £1.25 million (about $1.5 million) grant from the People’s Postcard Lottery in the United Kingdom. The “SMART Suit,” which targets people with disabilities such as…

Electric Bike Technologies (EBT) will donate 20 of its Liberty Trikes this year to help children with limited abilities get exercise and enjoy bike rides with their family and friends. In addition to helping young people with spinal muscular atrophy (SMA), the active-mobility tricycles, which can be folded,…

As part of ongoing efforts to have all newborns in the U.K. screened for spinal muscular atrophy (SMA), Muscular Dystrophy UK (MDUK) recently met with an ad hoc Scottish group to hear from parents and clinicians about life with SMA and the benefits of early diagnoses. The meeting, hosted…

The provincial government of British Columbia will cover the cost of Evrysdi (risdiplam), the oral spinal muscular atrophy (SMA) therapy approved by Health Canada in April for the at-home treatment of eligible patients age 2 months and older. Evrysdi’s annual costs are reported to be CA$93,456 (about $73,310) for…

Screening for spinal muscular atrophy (SMA), the leading genetic cause of infant death, is now available to 87% of all babies born in the United States, according to Cure SMA. The milestone was reached after Arizona and Louisiana began testing newborns for SMA this year, raising the number…

A University of Michigan (U-M) senior with spinal muscular atrophy (SMA) has won the school’s James T. Neubacher Award for his efforts to help make the campus — and everywhere else — more accessible to people with physical disabilities. Vincent Pinti, a political science major minoring in Spanish,…

Cure SMA and Cytokinetics have extended a partnership helping to heighten spinal muscular atrophy (SMA) education, awareness and fundraising, and t0 direct public policy in addressing community needs. To that end, the biopharmaceutical company will again be a National Gold Sponsor of some upcoming Cure SMA efforts…

Steven Spohn, who has spinal muscular atrophy (SMA), has reached his goal of raising $1 million for his fledgling initiative for disabled gamers, “SpawnTogether.” The funding, which came through donations, will go toward gaming equipment and consultation for The AbleGamers Charity, a nonprofit organization that seeks to make…

From a Zoom book discussion to candle lightings, efforts to mark Spinal Muscular Atrophy Awareness Month, observed each August, are underway to increase awareness of this rare genetic disease and raise funds to battle it. Supporters are involved in a range of activities that including swapping out their social…

To better understand and address barriers to the implementation of newborn screening across Canada for spinal muscular atrophy (SMA), Muscular Dystrophy Canada (MDC) has awarded more than $700,000 to projects in three provinces. This is the first round of awards to come from a collaboration between MDC…