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  • The Morale Monologue #13 – Is Spinraza A Treatment Or A Cure?

    Posted by michael-morale on November 28, 2018 at 7:02 am

    https://youtu.be/i2ef-pYXfis

    In this episode of the Morale Monologue, I’m going to answer a question that’s been floating around the SMA community and the medical community for nearly 2 years. When Biogen’s drug Spinraza became the first FDA approved treatment for Spinal Muscular Atrophy, there was quite a bit of chatter as to whether or not this was going to be considered a treatment or a cure.

    When I decided that I wanted to go through the Spinraza injections, early in 2017, I began researching Spinraza over the Internet. I wanted to know what it was and what it was going to do for me. In my search, I found a YouTube video of an interview that a local television station did in Arizona. They interviewed a young man by the name of Noah Spencer. Toward the end of the video, Noah made a statement that completely threw me off guard. He stated that doctors told him that after he was on this drug for a given amount of time, that he would be able to get up and walk on his own.

    In the video that you’re about to watch, I copied a small portion of Noah’s interview and included it, so that you could hear exactly what he said, and I then give my interpretation regarding this controversy video. The opinions that I give during this video are my own, and do not necessarily reflect the views of Bionews Services.

     

    Be sure to subscribe to the SMA News Today YouTube channel so that you don’t miss an episode of this vlog, and you can also connect with me right here on the forums page.

    noahoscar986 replied 5 years, 3 months ago 3 Members · 2 Replies
  • 2 Replies
  • kevin-schaefer

    Member
    November 28, 2018 at 3:09 pm

    Thanks for bringing this up Michael. It’s an extremely important topic to discuss, and I agree that when the word “cure” is thrown around lightly it causes a lot of misconceptions, both in and outside the SMA community.

  • noahoscar986

    Member
    February 26, 2019 at 10:45 pm

    Its really very important topic and I really appreciate that you give such great info on this topic.

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