This topic contains 5 replies, has 3 voices, and was last updated by  Kevin Schaefer 6 months, 1 week ago.

  • Author
    Posts
  • #11202
     DeAnn R 
    Keymaster

    I think it’s safe to say Spinraza is changing the face of SMA.  Diagnosis now comes with hope instead of fear.  As I’ve come to learn, the earlier treatment starts the better the chances are to save those neuron connections.  That’s why I believe infant screening is crucial.  Here’s a great article that points this out: https://smanewstoday.com/2018/01/25/sma-expert-arthur-burghes-in-a-speech-in-poland-urges-universal-newborn-screening/

    My hope is that every state adopts infant screening.  I’d love to know if you agree with me on this, or even if you disagree.  What are your thoughts?

     

  • #11283
     DeAnn R 
    Keymaster

    I’ve heard Indiana will become the fourth state to adopt infant screening for SMA.  Anyone know the other 3 states?

  • #11284
     Kevin Schaefer 
    Keymaster

    Thanks for sharing DeAnn. I agree that newborn screenings are a crucial advancement in the medical world today.

    I believe North Carolina has already adopted newborn screenings, or is in the process of doing so. This is definitely an important discussion in the SMA community today.

  • #11311
     DeAnn R 
    Keymaster

    Minnesota started screening infants on 3/5/2018.  Progress!

  • #11325
     Yan Bros 
    Participant

    No progress in Switzerland. No any newborn screening to date.

    • #11326
       Kevin Schaefer 
      Keymaster

      Hi Yan, thanks for joining the discussion.

      Hopefully Switzerland will start newborn screenings soon enough. Keep us posted!

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