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This topic has 6 replies, 5 voices, and was last updated 2 years ago by Kevin Schaefer.

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    • #12521
      Kevin Schaefer
      Keymaster

      I know that Spinraza is still the only FDA-approved treatment for SMA, but it’s an exciting time with other drugs in the pipeline. As our vlogger Michael Morale discussed in his last video, the company Cytokinetics is expected to make an announcement regarding their drug Reldesemetiv at this year’s Cure SMA conference, and AveXis is making big advancements as well.

      I’m just curious if any of you have asked your specialists about any of these clinical trial drugs. Or if there is anyone here who has a child who is participating in a clinical trial, what has the experience been like? Which drug do they receive, and what effects have you seen so far?

    • #12540
      DeAnn R
      Keymaster

      Since I’m on Spinraza, I’m just biding my time until the next wave comes to market.  We are certainly living in an interesting time.  As a parent how do you decide what to do for your child?  On the one hand there’s an effective yet costly treatment available.  On the other hand there may be a trial your child may qualify for.  Will the new treatment be better?  So many unknowns.

      As for me when a new treatment does come out there will also be many considerations. Mainly in my opinion method of administration, effectiveness and cost.  Of course there’s also the side effects to consider.  So far in my case they’ve been minimal.  Wait and see I guess.  Now that I’m on Spinraza the waiting part for me is a bit more bearable.  Was considerations do you have with upcoming treatments?

    • #12543
      Ryan Berhar
      Keymaster

      After like a year and a half of fighting for Spinraza and ultimately getting denied time after time after time, I am honestly done pursuing it at this point. I don’t have a fantastic understanding of what all the other treatments are or how they work, but I know there are several, and I’m confident we are on the verge of a big breakthrough. So at this point I’m content to wait for a better form of treatment.

    • #12570
      Esther Collington
      Participant

      I wish the UK had Spinraza, children can have it but it doesn’t look like adults will any time soon. No other treatments available.

    • #12589
      Adnan Hafizovic
      Participant

      It would be real nice that some one write who are in clinical trials.How go in that clinical trials and others things.

      • #12595
        DeAnn R
        Keymaster

        Unfortunately I believe if individuals are on trials they aren’t allowed to talk about it until the trial is over.  If I’m wrong though yes, we’d love to hear from folks!

      • #12648
        Kevin Schaefer
        Keymaster

        Adnan check out some of the news updates on our main website and the Cure SMA site. The Cure SMA conference just took place in Dallas, Texas, and there were several updates from the drug companies that were present.

        http://www.smanewstoday.com

        http://www.curesma.org

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