A Program of the EveryLife Foundation for Rare Diseases
Please tell your Missouri Representative to advance life-changing newborn screening for MPS II and SMA
We have a great opportunity for Missouri to include two genetic and potentially deadly diseases in their Newborn Screening Panel. In the next week, the Missouri House of Representatives will be voting on HB 66 to expand the newborn screening requirements to include Hunter Syndrome (MPS II) and spinal muscular atrophy (SMA).
Newborn screening is necessary for MPS II and SMA because timely treatment allows for much better outcomes. Without newborn screening it can take months or years to get a diagnosis. During that time, the disease is causing irreversible damage throughout the body. Currently, MPS II and SMA have treatments approved by the Food and Drug Administration with several more treatment options in the pipeline. Newborn screening would ensure timely treatment of MPS II and SMA, which requires early intervention for the greatest benefit.
Please take 3 minutes to ask your state Representative to support HB 66 by entering your information below!
Working together, we can find solutions that turn hope into treatments.
Thank you for your support and advocacy!
Stephanie Bozarth, MSW
National MPS Society
Chairman, Board of Directors
Chair, Advocacy Committee
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