SMA News Forums Forums Awareness and Advocacy Raising Awareness of SMA Newborn Screenings for SMA in the United States

  • Newborn Screenings for SMA in the United States

    Posted by michael-morale on April 16, 2019 at 11:00 am

     

    SMA News Today has been discussing the topic of newborn screenings for SMA for quite some time now. Even though spinal muscular atrophy (SMA) has been added to the national registry of diseases that are approved for newborn screenings, it must be adopted by each individual state to become effective. The picture above indicates that many states in the U.S. have yet to address this issue.

    I was born and raised in Dallas Texas, and I’ve stated numerous times that I have contacted my local governmental officials about this. I even got as far as my governor’s personal secretary to discuss this issue. Luckily, the state of Texas is at least looking into the idea of funding SMA screenings for newborns. However, I’m still astonished at the number of states that haven’t addressed this issue.

    Don’t get me wrong, I’m thankful for the states that are taking the initiative, but it’s hard to ignore the ones that are doing nothing. We live in a country with so many freedoms. Why is the health and welfare of our children with SMA not given proper attention? Our government officials need to start thinking about this issue as a priority.

    I know I’m ranting here, but I can’t emphasize the importance of newborn screenings enough. I encourage you all to contact your congresspeople and representatives, and to tell them why this issue is so crucial. Thank you.

    To learn more about SMA, please visit our main website here.

    michael-morale replied 5 years ago 1 Member · 0 Replies
  • 0 Replies

Sorry, there were no replies found.

Log in to reply.