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 have a family member named Brycen Hunter-Miles Jennings from Virginia that is 6 years old and because his family found out when he was a few months old that he was diagnosed with X-ALD, they were able to keep monitoring it with MRI’s and watching for signs and recently has undergone Gene Therapy in Minnesota to stop the progression and give hope for a long, healthy life. I strongly support having ALD added to the Newborn Screening in all 50 States.