• lisa-bonahoom

    Member
    October 24, 2021 at 7:55 pm

    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

    • lonny-strum

      Member
      January 8, 2022 at 7:36 am

      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?

    • bakereld

      Member
      January 11, 2022 at 2:43 pm

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

  • laurel-linton

    Member
    January 11, 2022 at 3:00 pm

    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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