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 strongly support this proposal to add newborn screening for SMA and ALD. I am a 29 year old woman who was recently diagnosed with ALD. I’ve connected with many woman who found out they were ALD carriers by unknowingly passing the gene on to a child. It is truly devastating hearing their stories about the loss of their children and loved ones to this disease. The loss of their loved ones could have been prevented if they had the option to screen their newborn child. This implementation can SAVE LIVES!!! More people are discovering they have these genetic mutations ever day. That is why it’s imperative that this proposal be passed. Families will have the opportunity and knowledge to access medical care, start early treatments and most importantly, give their child the chance to live! I’m hoping to start a family of my own one day and praying that this proposal is approved.