Save the lives of newborn babies!
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We, the undersigned, petition the Minnesota Newborn Screening Advisory Committee to make testing for Spinal Muscular Atrophy (SMA) part of the mandatory newborn screening panel.
SMA occurs in one in every 11,000 births and is one of the most common lethal genetic disorders. In Minnesota alone, it is estimated there are 206 individuals impacted by this disease. Approximately 60 percent of affected children suffer from SMA type I, the most severe form. Infants with this type of SMA typically begin to experience symptoms between birth and six months of age. It is only after the devastating symptoms of SMA take hold that the majority of children receive an SMA diagnosis. Historically, more than 95 percent of these children die in infancy or require extensive respiratory support by their second birthday.
On December 23, 2016, the U.S. Food and Drug Administration approved the first-ever therapy for SMA, called SPINRAZA™. Evidence gathered in clinical trials shows this new therapy has been highly effective in slowing the progression of SMA, and when administered before symptoms appear, can prevent symptoms for presenting. Screening newborns for SMA and providing early intervention is the most effective way for babies with the disorder to live their best life.
Now that a treatment option is available it is imperative that SMA be added to the newborn screening panel as quickly as possible to save lives of our youngest, most vulnerable Minnesota citizens.
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