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Ataxin-2 Gene Mutation

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    Ataxin-2 Gene Mutation

    Hi

    My Father has had a genetic test done for his MND/ALS diagnosis and he has the Ataxin-2 gene mutation

    There is a trial which is recruiting for this - https://clinicaltrials.gov/ct2/show/NCT04494256, which we are trying to get on to but I just wanted to check whether anyone here has the same mutation and has enrolled onto the trial?

    I realise its only in Phase 1 so early days but keeping this thread open in case anyone can update on their experience

    Thanks

    #2
    Aadam Is your father in the UK or which trial centre is he hoping to attend?
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi Ellie

      Yes we are in UK but unfortunately they don't have this trial running here so the closest is Netherlands

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        #4
        Aadam Really hope your dad gets a place on that trial. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Thank you very much Ellie

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