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This topic has 3 replies, 3 voices, and was last updated 2 years, 2 months ago by Adnan Hafizovic.

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    • #16036
      Kevin Schaefer
      Keymaster

      Hey everyone, here’s my latest column:

      https://smanewstoday.com/2018/12/11/sma-research-advancements-grateful-patience/

      I think it’s a really exciting time for all of us in the SMA community, and I wanted to write about my experiences with Spinraza in light of the recent news about the treatment zolgensma (previously called AVXS-101). Despite the fact that this treatment has been filed for FDA-approval, there are still people complaining about how much it costs, and how it will only be made available to infants with Type I SMA initially.

      I understand these frustrations, but I also think it’s a time to celebrate how far we’ve come. With a new treatment on the horizon, more technologies out there to help people with disabilities live more independently, and other medical advancements, I think we all have something to be grateful for.

      Let me know your thoughts on this column, and if you have any questions about zolgensma or anything else.

    • #16046
      DeAnn R
      Keymaster

      I agree with you that we have a lot to be grateful for.  Frankly I wouldn’t want a rush for approval if it wouldn’t be effective for other ages and types.  Recently I’ve been seeing social media comments of folks that have other NMD’s that are upset SMA has a treatment and they don’t.  My view is that every scientific advancement is a win regardless if it directly impacts you or not.

      • #16048
        Kevin Schaefer
        Keymaster

        I agree. While I understand the frustrations, I think it’s just important to celebrate how far we’ve come.

    • #16088
      Adnan Hafizovic
      Participant

      At least it has some improvement about cures for SMA and that is good.At least we have hope for better tommorow.

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