The Tufts Medical Center, a teaching hospital of the Tufts University School of Medicine, has been awarded a Muscular Dystrophy Association (MDA) grant to investigate patient access to treatments for spinal muscular atrophy (SMA) and other diseases. The project, led by James Chambers, PhD, will evaluate access to…
BraunAbility has partnered with the nonprofit organization Laughing at My Nightmare (LAMN) to donate a wheelchair-accessible vehicle to a 6-year-old girl with spinal muscular atrophy (SMA). Fynlee Armstrong, a “sassy and spunky little girl” from Clyde, Texas, requires a wheelchair to move around. Over the last few years,…
Diagnostic testing company Ambry Genetics has launched a reproductive health program to increase access to carrier and prenatal screening for genetic disorders such as spinal muscular atrophy (SMA). The Comprehensive Assessment Risk and Education (CARE) program seeks to enhance the availability of carrier screening and noninvasive…
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…