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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 1 reply, 2 voices, and was last updated 10 months, 3 weeks ago by Lupa F.

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    • #20650
      DeAnn R
      Keymaster

      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 10 months, 3 weeks ago by DeAnn R.
      • This topic was modified 10 months, 3 weeks ago by DeAnn R.
    • #20661
      Lupa F
      Participant

      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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