Newborn Screening For SMA – We Need Your Help
SMA was recently added to the national registry for newborn screenings in the United States. While this is an important step, more work needs to be done to ensure that every infant gets tested for spinal muscular atrophy during the newborn screening process.
Each state works independently from this national registry, and it must be adopted by each state to be added to the state level. Some states have already taken the steps necessary to add SMA to their registry, but many have not.
We at SMA News Today are making a concerted effort to inform our readers as to the importance of this topic. Many of the children who have been on Spinraza since birth are meeting milestones that able-bodied children are meeting. Some of these children are walking and running, and the importance of getting these children on treatment as soon as possible cannot be understated.
With this being said, we need the help of every person here. It takes special testing equipment to test for SMA, and once added to the state list, the state can then fund the money necessary to purchase the equipment to test for SMA. If you go to https://www.babysfirsttest.org/, you can go to the state in which you live to find out if SMA has been added to the state level. If you find that SMA is not on your individual state screening list, we urge you to contact your congressperson, senator and governor, and urge them to add SMA to the state level registry list. My next video will go into greater detail about this topic.