SMA screening in Newborns in California
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Spinal muscular atrophy (SMA) is the leading cause of genetic death in infants. Although it has many types, type 1 children have a life expectancy of under 2 years (type 0 infants live a few weeks). On December 23, 2016 the FDA approved the first treatment for this disease, Spinraza. Data suggests that if the drug is given early in life, it may yield better outcomes for these children. Therefore it is imperative to test/screen every newborn for this devastating disease at birth. Please help us implement this in California and in every state in the United States.
I have a 1.5 y/o with type 1. Had she been given the chance to start, the first newly approved, treatment early on it would have saved her from all her losses. She continues to make small gains and we are thankful. We need to make sure babies are tested early and begin treatment ASAP. PLEASE go to curesma.org and educate yourself on Spinal Muscular Atrophy.
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