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Doddie Weir Foundation - Research update

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    Doddie Weir Foundation - Research update

    It occurred to me that we haven’t heard from Lee Millard for a while. I always enjoy his quirky but soundly based comments on MND and life in general.

    In looking at his blog I came across this podcast from the Doddie Weir foundation. It’s a wide-ranging discussion including the latest research – trials and so on – about MND, featuring Prof Ammar Al-Chalabi.

    https://podcasts.apple.com/gb/podcas...=1000487644745

    Doug

    #2
    I have listened to this and definately recommend it, husband with MND found it hopeful as well.

    Comment


      #3
      Thanks Doug x
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        More information in this Dodcast than in the last 8 months since my diagnosis from ANY of the ‘experts’ here in the south west of England

        Comment


          #5
          Yes I found that interesting - thanks Doug

          Comment


            #6
            Thanks Doug.

            I have been hearing from the optimists for over 10 years now. I still think that it is highly unlikely to get something for even a small group of us that is worthwhile taking for at least 5 years. MND is more complex than cancer and needs that kind of money throwing at it.
            Copyright Graham

            Comment


              #7
              I have listened to all the Dodcasts and they are great. The information is good and I like the way Doddie challenges the experts

              Richard
              Richard

              Comment


                #8
                I don't know if this is relevent, but recently I read about a computer ( I have too much time on my hands these days ...) Deepmind, I think it was called, cracked a long-standing problem connected with protein-folding or mis-folding. I think it's possible a few neuro-degenative disorders may have tie-in. I was wondering at the time if that might eventually help.

                Comment


                  #9
                  Yes, I agree Gordan. Supercomputers will model exactly what is wrong with our neurones eventually. Most, if not all of us have a gene defect. No matter, something will be wrong with the molecular machinery.

                  The first task is to identify the problem but as most of us are finding, that in itself takes years.
                  Copyright Graham

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                    #10
                    This was on the BBC site yesterday x
                    University of Edinburgh scientists are a step closer to being able to reverse the damage caused by MND.

                    Comment


                      #11
                      (Ps not yesterday, today. Need to click upper part of link)

                      Comment


                        #12
                        I'll gladly eat my hat if it works for me!!
                        Copyright Graham

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                          #13
                          Wouldn’t it be great, just imagine, everyone with MND in a massive group eating their hats and celebrating. I dream.

                          Richard
                          Richard

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                            #14
                            I think is very difficult to balance in my head press coverage that is as much about fundraising strategy as research that might help us MND warriors.

                            It's true there is a general view that because of the number of people now looking at MND research there is some real hope of a breakthrough but getting some axons to behave in a dish is very different to doing something that helps living people.
                            Warmly


                            Andy

                            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

                            "Things turn out the best for people who make the best of the way things turn out"

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