SMA newborn screening in TN
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Please join our efforts to require SMA newborn screening, and help end the deadly effects of SMA.
• SMA is the number one genetic killer of babies and children under the age of two.
• SMA is a motor neuron disease like ALS.
• SMA robs the ability to move, swallow, and eventually breathe.
• One in 40 unknowingly carries the gene responsible for SMA.
• When two carriers have a baby, there is a 25% chance the baby will have SMA, a 50% chance the baby will be a carrier, and a 25% chance the baby will be unaffected.
• One in 10,000 babies is born with SMA.
The FDA approved Spinraza as the first treatment for SMA on December 23, 2016. However, newborns continue to go untreated when they would receive the most benefit, as no states are performing SMA newborn screening.
Newly diagnosed Type 1 SMA babies treated with Spinraza didn't lose their ability to move, swallow, and breathe, but instead gained strength. Some even crawled and took steps — steps away from the deadly effects of SMA.
Newborn babies treated within the first two weeks never lost abilities to SMA, and developed as average babies do. They crawl, eat, stand, and walk. Only newborns with older SMA siblings have been treated this way, as their parents knew to screen for SMA. Every newborn needs to be screened for SMA, so babies born with SMA can develop just as babies without SMA do.
Many children have passed away from this horrific condition. I wish someone would have petitioned for this before my daughter was born. My daughter, Peyton Minor, was diagnosed at 4 months old. She lost her ability to swallow and was no longer moving her legs. With the treatment, she is improving, but she has a long journey ahead to catch up on milestones. I don’t want any other parents to go through the same devastation and health issues we do with our daughter who is type 1. Please sign and help other SMA get the treatment they need before they show symptoms!!!
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