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    Planes, Trains, & Accessible Travel With SMA

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    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

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  • This topic contains 1 reply, has 2 voices, and was last updated by  Lupa F 1 month ago.

    • Author
    • #20650
       DeAnn R 

      One question on my mind is why children and adults receive the same dose of Spinraza.  Apparently I’m not alone.  Here’s an article that details a new study testing Spinraza at a higher dose. One question I have is if the higher dose would come with a higher price-tag. Of course we’ll have to wait and see! What are your thoughts on this news?

      • This topic was modified 1 month ago by  DeAnn R.
      • This topic was modified 1 month ago by  DeAnn R.
    • #20661
       Lupa F 

      The main nerves that get affected by SMA are there from birth so that’s one reason it possibly works well no matter what size you are. I wouldn’t mind trying a higher dose though to see if that feeling that it’s sort of wearing off as the next dose is coming up might go away even if it doesn’t do anything better the rest of the time.

      But I really hope it’s not a scheme to jack up the price to try to make up any revenue lost to Zolgensma since actually making the drug is such a tiny part of its cost. The cost was always said to be based on its impact to the healthcare system and little to do with manufacturing or administering it.

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