Last night, Governor Eric Holcomb of Indiana signed HB 1017, adding spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID) to the state’s newborn screening panel. The bill makes Indiana the fourth state in the country to adopt permanent SMA screening, following Missouri, Utah and Minnesota. The legislation was sponsored by Representative Doug Gutwein, and […]

The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in several states. Indiana Poised to Become the Fourth State to Adopt SMA Screening In Indiana, HB 1017 has been passed by both the House and Senate, and is currently awaiting Governor Eric Holcomb’s signature. This bill would institute

Rare Disease Day is today, February 28! And we’re calling on our entire spinal muscular atrophy community to get involved. Rare Disease Day is important to us because it is a time for individuals impacted by a rare disease—or those whose loved ones are impacted—to come together. It is a time for us to raise