Advocacy
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 […]
Read More ›Wisconsin Moves One Step Closer to SMA Newborn Screening
The Wisconsin Secretary of Health Services, Linda Seemeyer, recently approved the addition of SMA to the newborn screening panel through the administrative rule making process. […]
Read More ›HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA
Health and Human Services Secretary Alex Azar today approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued […]
Read More ›SMA Newborn Screening Moves Forward in New Jersey
Earlier this month, the New Jersey State Senate Committee on Health, Human Services, and Senior Citizens unanimously approved S. 974. Introduced by Senator Troy Singleton, […]
Read More ›Ohio Moves One Step Closer to SMA Newborn Screening
The Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department […]
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