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A Motor Neurone Gene Therapy that Works!

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    A Motor Neurone Gene Therapy that Works!

    Not specifically for us, but there is promise...

    https://www.bbc.co.uk/news/uk-57309613

    Very important to find out which gene is buggered in your genome. xx
    Copyright Graham

    #2
    I saw that. It's definitely promising.

    Comment


      #3
      Hi Graham,

      When I saw this on the news I did wonder if there would be a similar therapy for MND.
      I’m going to do this even if it kills me!

      Comment


        #4
        I know there is at least one trial going on for the gene that I have inherited. The research will take at least another 2 years, but looks promising for my specific wonky gene.

        Sadly, in about 90% of cases, no specific genes have been found. I hope research looking specifically at rebuilding motor neurons is also going on for the vast majority of MND sufferers.
        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

        Comment


          #5
          I 'saw' my consultant for the first time in over 7 years and he did seem more hopeful. I have a faulty gene that so far has not been linked to MND, although DCTN1 is a component of the motor neurone. It is highly suspicious, as father's side all suffered from neurology, even PSP.

          You have to imagine 24th century technology that enables you to view the neurone working in real time and say, "Bugger me! That's what is going on!".
          Copyright Graham

          Comment


            #6
            Hi Graham, Evelyn how do u go about finding what gene u have as the help I have had since being diagnosed has been shocking, how do u find about trials 🤦‍♂️

            Comment


              #7
              Hello Patw,

              You can find information about trials here https://www.mndassociation.org/research/

              I don’t believe that the NHS offers a genome test unless you are part of a study but you can pay for one privately. Beware that there are some dodgey deals on the internet.
              I’m going to do this even if it kills me!

              Comment


                #8
                Thanks Barry x

                Comment


                  #9
                  Patw I was referred to neurology after my nerve conduction tests and the neurologist sent of or 2 different types of blood test - 1 was specific to genetics, so i guess they looked or for all the known wwonky ones????
                  Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

                  Comment


                    #10
                    Hi Pat,

                    It is your consultant that should be sorting it out. Read the 'Riot Act', as if your life depends on it. There are trials taking place NOW for C9orF72. Of course you need to be gene tested first. You're entitled to a second opinion but do your homework or go private before opting back in to NHS. xx
                    Copyright Graham

                    Comment


                      #11
                      Thanks Graham x

                      Comment


                        #12
                        Graham I was referred or the C9orf72 trial, but my disease is (thank goodness) going too slowly! As far as i know, the current trial is going on with no UK repesentation
                        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

                        Comment


                          #13
                          the C9orf72 trial is running in London and Sheffield
                          Best

                          Robin

                          Diagnosed 05/2017 Familial ALS Limb onset

                          Comment


                            #14
                            Guy Is that the trial started a while ago? There is another phase starting late April 2021 - i was told there would be no UK participants in the new phase. Still, looking good for us familials - in a few years maybe. ust gotta keep on keeping on.
                            Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

                            Comment


                              #15
                              Hi Evelyn I was thinking of the Biogen gene therapy trials (SOD1 and C9orf). SOD1 were only looking for fast progressors recently but I think they have stopped recruiting now and final results due later this year. C9orf trial is much more recent so should be some phased recruitment in the future I'd have thought. Results looking good, as you say!
                              Best

                              Robin

                              Diagnosed 05/2017 Familial ALS Limb onset

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