Action | Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System |
Stage | Proposed |
Comment Period | Ended on 7/9/2021 |
I want to support the addition of adding X-ALD and SMA to the VA newborn screening system. I am the mother of a child with a lifelong medical condition. Having a sick child is something no one will understand until it happens to them (and I wish it never does). It takes a toll on families in general, relationships and finances. A screening that could identify a debilitating disease that would enable treatment to start as early as possible should be the rule, not the exception. Let’s use science to save lives and give these sweet babies and their families hope for a bright future. If anything, please be empathetic and consider the addition of the tests.