According to the Centers for Disease Control and Prevention (CDC), newborn screening identifies conditions that can affect a child’s long-term health or survival. Early detection, diagnosis, and intervention can prevent death or disability, and enable children to reach their full potential. Each year, millions of babies in the U.S. are routinely screened—using a few drops of blood from the newborn’s heel—for certain genetic, endocrine, and metabolic disorders. They are also tested for hearing loss and critical congenital heart defects (CCHDs) prior to discharge from a hospital or birthing center.
In July 2018, the federal government added spinal muscular atrophy (SMA) to the Recommended Uniform Screening Panel (RUSP)—the list of suggested conditions that states should screen for within their statewide universal newborn screening programs. Since then, Cure SMA and its advocates have made tremendous progress in helping to educate and encourage adoption on the state level.