Forum Replies Created

  • Laurel Linton

    Member
    January 19, 2022 at 3:56 pm in reply to: ALS Community Invited to Help Set Research Priorities in US

    I agree that familial C9 would be a good place to start!

  • Laurel Linton

    Member
    January 11, 2022 at 3:00 pm in reply to: C9 research

    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

  • Laurel Linton

    Member
    January 4, 2022 at 2:58 pm in reply to: Work arounds for the bitter taste of phenylbutryate?

    Where did get your phenylbutryate and  tudca? I have Tudca pills from Amazon but not the sodium PB.

    Thanks

    Laurel

  • Laurel Linton

    Member
    December 24, 2021 at 11:34 am in reply to: artificial voice/speech equipment

    I was diagnosed with als 6 months ago and was losing my ability to swallow when I was referred to the Deanna Protocol. It was developed by a doctor trying to save his daughter. She was given 2 years to live and it’s 12 years later and she is alive and moving. I have been taking this and my ability to swallow has returned and the disease seems to have stopped progressing.I am also on riluzole and going into the oral study for Radacava in January.

  • Laurel Linton

    Member
    December 14, 2021 at 7:09 pm in reply to: Using immunosuppressant drugs to halt / slow down ALS progression

    I would be very interested in learning more about this topic!
    Thanks
    Laurel

  • Laurel Linton

    Member
    June 1, 2022 at 7:48 am in reply to: Genetics, How Does this Knowledge Change Things for You?

    I found out I have the C9 gene mutation and it was devastating to learn I have it. It’s slow progressing so far but since my first symptom almost two years ago to my diagnosis Nov 2021 I have gotten very tired. I take each beautiful day I’m able to with thankfulness to God. But I’m tired. God bless all those that are fighting this devastating diagnosis.

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