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    #16
    Guy Can people still be accepted?
    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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      #17
      EvelynMW Recruitment was due to close last November, but Covid may have disrupted things, so it's definitely worth asking your neurologist and/or the 3 test centres listed.

      This is the trial, Evelyn, with inclusion/exclusion criteria: http://www.mndcsg.org.uk/mnd-clinica...c9orf72-trial/
      ​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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        #18
        Ellie Looks very similar to the one that rejected me.
        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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          #19
          Don't take it personally Evelyn! At least we won't reject you 😘
          ​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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            #20
            I would expect the C9orf trial will run like the similar SOD1 trial. If so, recruitment will be active before each ascending dose. At present they're probably only on the first, and lowest, dose. As Ellie says try to get your name on the list at the centres as it's likely to be on a first come, first served basis. After the initial trial period for SOD1, Biogen opened an extension trial for all participants with no placebo and maximum safe dose being used.
            Best

            Robin

            Diagnosed 05/2017 Familial ALS Limb onset

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              #21
              Had my 1st follow up consultant consultation post diagnosis today and gene therapy trials mentioned...so I assume they're still looking for participants.
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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