The money — with $50,000 to be given to nine sites — aim to boost the number of patients that sites can follow, treat and monitor. Five of the nine have already been announced: Boston Children’s Hospital, Children’s Hospital of Philadelphia, Johns Hopkins School of Medicine, The Ohio State University and Washington University School of Medicine in St. Louis.
The other four sites will be announced later this month, said Chicago-based Cure SMA, which created the grants to eliminate some of the practical limitations to these sites’ functioning. These limitations — such as pre-authorization and insurance approvals, scheduling and clinical support — delay SMA treatment and care.
Cure SMA awarded these sites were awarded through a competitive process based on the number of patients currently followed and treated at each one; an evaluation of the current bottlenecks and barriers to access, and the number of patients that could potentially be included if these limitations were eliminated.
In other news, Cure SMA recently launched an Advocacy Action Network. Its goal is to allow SMA advocates to share their voices on issues that affect the daily lives of those with the disease. Importantly, members of the network will discuss funding at the National Institutes of Health (NIH) as well as newborn screening for SMA and drug approvals by the U.S. Food and Drug Administration and other regulatory agencies.