This September as we recognize Newborn Screening Awareness month, we are proud to announce a new partnership with Cure SMA aimed at moving newborn screening forward for spinal muscular atrophy (SMA)—the leading genetic cause of death in infants.

This is an exciting time for the neuromuscular disease community as decades of research are translating into potential therapies for lethal diseases. The genetic causes for many neuromuscular diseases have been identified and precision medicines are in development to target the underlying causes of disease. In fact, just yesterday, Biogen and Ionis Pharmaceuticals announced their submission of a new drug application to the FDA for approval of nusinersen, an experimental therapy for the treatment of SMA. With therapies on the horizon for diseases such as SMA, early identification is important—and one way to reach those who have SMA early is through newborn screening.

We are thrilled to be working with Cure SMA to move our collective goals forward for SMA newborn screening. While our partnership in this effort has recently begun, MDA has been engaged in and committed to newborn screening for neuromuscular disorders for many years, and Cure SMA is focused on the same goal for SMA. Our organizations are working together to engage additional stakeholders including researchers, clinicians, industry, and policy makers—with the goal to provide screening for SMA to all newborns in the U.S.

Just last month, both MDA and Cure SMA formally testified to the committee that determines whether disorders will be recommended for inclusion on the Recommended Uniform Screening Panel. This committee is appointed by the Secretary of Health and Human Services (HHS) and considers disorders to be included in the list that each state is recommended to test for in newborns. You can review MDA’s comment to the committee about the importance of newborn screening for SMA, Duchenne muscular dystrophy, and other neuromuscular disorders where early intervention is critical here.

Time is of the essence in implementing newborn screening for SMA and other neuromuscular diseases where early identification and treatment is important, and together MDA and Cure SMA are working hard to ensure that SMA is included in the newborn screening public health program.

We look forward to sharing developments as MDA and Cure SMA’s partnership in this exciting endeavor evolves.