C9 research

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    • October 20, 2021 at 8:29 am #20796
      Lonny Strum
      Participant

      Is anyone aware of the status of Biogen’s C9 gene clinical trial? It was in phase 2 in 2020 but have heard nothing about its progress.

       

    • October 24, 2021 at 7:55 pm #20811
      Lisa Bonahoom
      Participant

      Hi Lonny!  It is still going.  I am in it.  They are still trying to find the optimal dosage.   It is very tightly controlled.   Do you have C9?  Lisa

      • January 8, 2022 at 7:36 am #21282
        Lonny Strum
        Participant

        No my late wife had the C9 gene. I am very interested in understanding where the research is. How are you doing on the meds?

      • January 11, 2022 at 2:43 pm #21298
        Joan
        Participant

        I have the C9 defect.  what study are you in and through whom or where?

    • January 11, 2022 at 3:00 pm #21296
      Laurel Linton
      Participant

      Lisa,

      Good morning, I just saw your link about the C9 Gene and I was diagnosed November 2021 with ALS and also with the C9 gene. Is there a way to join the study now or is it to late.

      Thanks for any help you can share with any of us.

      Take Care,

      Laurel Linton

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