Advocacy
8th Annual “Hope on the Hill” Congressional Dinner Will Be Held Later This Month in Washington D.C.
The 8th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 27, bringing together SMA families, government officials, and industry leaders […]
Read More ›Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption
Progress is currently being made in several states for getting SMA added to Newborn Screening panels. We are delighted to share this news with you […]
Read More ›North Carolina to Screen Newborns for SMA Through Early Check
Early Check, a new research study led by RTI International, is now available for newborn babies in North Carolina. Early Check is a free screening […]
Read More ›Community Spotlight: Adrienne Vollmer
In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in […]
Read More ›Community Spotlight: Allyson Henkel
My son Pete and I began advocating to have SMA added to the newborn screening panel in Pennsylvania in December of 2017. Pete was 13-years […]
Read More ›Community Spotlight: The Lasko Family
After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as […]
Read More ›Cure SMA’s Approach to Newborn Screening
The complexities of newborn screening require a sophisticated, multifaceted approach. With this in mind, Cure SMA has been working on newborn screening through several different […]
Read More ›SMA Newborn Screening Advancements
The first FDA approval of a therapy for SMA has created an opportunity for our community to move forward on another of our long-term priorities: […]
Read More ›New York to Implement Newborn Screening for SMA October 1st
New York State will screen every child for SMA beginning October 1, according to the New York State Department of Health. New York joins Missouri, […]
Read More ›Illinois Adopts Permanent SMA Screening
Last night, Governor Bruce Rauner of Illinois signed SB 456, adding spinal muscular atrophy (SMA) to the state’s newborn screening panel. The bill adds Illinois […]
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