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    #46
    What is it about living that compells us to live? 🤔

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      #47
      hope i think. or perhaps picking death is ok but just getting there is a bit scary.

      stephen's genetic test came back negative. big relief for our kids. the doctor told us that he didnt feel that there was anything of use even on the horizon. sometimes the truth isnt always welcome.

      stephens als sounds the same as yours gary.

      i dont think a genetic test would help me graham and i dont know that i would want one. perhaps one day we will have a genetic test when we are born, or even before. then they will decide if we get to live or chuck us in the bin.

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        #48
        I've always been a firm believer in assisted dying and took an interest in the various court cases over the years, where people tried to change the law. When I was diagnosed in July, I jokingly said to the consultant that because of lockdown I couldn't even book my ticket to Dignitas. He said that was a common reaction to diagnosis, but if you ask people again six months later they're glad they didn't, despite the difficulties of living with the condition.
        Each day is made easier with a bit of humour.

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          #49
          Originally posted by Graham View Post
          Hi Gary,

          First things first, now is the time to go on your holiday of a lifetime, I missed my opportunity.

          .............
          Hi Graham. I'm not a holiday of a lifetime kind of guy really. We would have probably had a few holidays abroad in the future but neither my wife nor I had any great travel ambitions. Happier in a cottage in the UK. As I said in another post, in January I said to my wife that we needed to make the most of this year in case I deteriorated, but like everyone else, those ideas were thwarted by Covid. Hopefully things might improve by spring. I'd be happy to just have friends round for a drink at the moment. I'd have to be on thickened wine though.
          Each day is made easier with a bit of humour.

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            #50
            Hi Gary,

            Good stuff, I was in denial until too late when I had missed the opportunity.

            Hi Denise,

            With Brainstorm failing last week, the other pharmaceutical companies will have breathed a huge sigh of relief and realised that their potential treatments do not need to be expedited PDQ. I now think 2025 at the earliest but of course I hope I am wrong and Lee is right.

            Hi Matthew,

            I think my low expectations from life have helped me to be able cope with MND. Give me a laptop with VS2019 and I am as happy as a pig in shot.
            Last edited by Graham; 23 November 2020, 00:29.
            Copyright Graham

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              #51
              .MND Research liked
              MND Association
              @mndassoc
              Launching soon Microscope #United2EndMND.

              This will bring together people with MND, researchers and charities. We're asking the Government for £50 million over 5 years to fund a virtual centre of excellence for MND research.

              This is going in the right direction at last.....

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                #52
                If there is no focus on expediting the best treatments that are currently in trial, then it is the same old, same old, of back slapping and high-fives with no end result.
                Copyright Graham

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                  #53
                  Originally posted by Graham View Post
                  If there is no focus on expediting the best treatments that are currently in trial, then it is the same old, same old, of back slapping and high-fives with no end result.
                  This is a brand new approach centred around a more efficient trials platform and a conveyor belt of new drug discovery. Here in the UK we have world leading trial capabilities and just need the right funding. If we can get the ask for the required initiative it would represent a tripling of yearly government funding! This would in turn attract pharma investment.

                  With regards to expediting current promising drugs in trials. By definition they have to run full length and above all show proven, data driven and targeted effectiveness. Nothing can speed up those trials in action aside a time machine.

                  Advocacy for any drug is only truly worthwhile, and efficient, once shown scientifically to be effective and not by anecdotal stories. Sadly we keep seeing such pressures. I am not aware of any drugs that have yet shown such efficacy. There will be, but we can’t say when yet.

                  We are making genuine progress now, at a pace not seen before.

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                    #54
                    Hi Lee,

                    I can agree with the notion that the researchers know more than ever before and should be able to offer a treatment "soon", after the success of the vaccine rollout. It is all protein engineering and the fastest supercomputers are able to model our neurones failing, in the various ways they do. So all I am asking is: Why is it taking so long?
                    Copyright Graham

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                      #55
                      Why is 80% of any research grant given usually to cover Salaries and expenses. It goes back to what everybody has been saying. badly Audited funding for freeloaders, career furthering and back slapping events. This must have an impact on the reason MND is no further forward in any treatment considering the millions if not billions poured into it over the years. I wish the way big Pharma and the Govt got around to fast track a vaccine for covid , could be done for MND. But the impression is the spongers would be against that . No more money .

                      Comment


                        #56
                        Originally posted by Graham View Post
                        Hi Lee,

                        I can agree with the notion that the researchers know more than ever before and should be able to offer a treatment "soon", after the success of the vaccine rollout. It is all protein engineering and the fastest supercomputers are able to model our neurones failing, in the various ways they do. So all I am asking is: Why is it taking so long?
                        The production of a vaccine is easy compared to a systemic, self perpetuating central nervous system disease.

                        We have a good idea of some of the processes involved but not how they contribute to neuronal death in mnd. Combine this with the lack of of biomarkers and we have a perfect storm.

                        Computer power helps with models we humans have come up with, but contrary to public belief a computer can only speed up Hunan developed models.

                        I give you an example.

                        Why was the c9orf72 gene causation found 25 years after sod1 and yet it affects far more people than sod1?

                        Its complicated, but it took a logical leap of mathematics and more so an innovative view of genetics to come up with the hypothesis that was then modelled and then proven by computer analysis.

                        We are very close, but we need more investment to push over the line. What the uk researchers have achieved on barely a 1/10 of the usa investment is staggering.

                        We also probably need to attack the disease pre-symptoms, rather like we do with statins for heart disease.




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                          #57
                          Onein300 I hear what your saying and understand by the sounds of it you are quite clued up on things. But the basic mechanics of the way things are being done in finding any treatment for MND are tried and trusted. That is the problem , there must be something or new avenues to take.
                          Here is an example why we are no further forward. I have been trying to get Sativex for years now . through GPs , Consultants, and Health boards. and the weak and pathetic reason I keep getting is , Its not been tested on MND. but keep taking Gabapentin , Diazepan, Brufen etc. So what chance does any treatment have if these walls are still there.

                          Comment


                            #58
                            Originally posted by billy106 View Post
                            Onein300 I hear what your saying and understand by the sounds of it you are quite clued up on things. But the basic mechanics of the way things are being done in finding any treatment for MND are tried and trusted. That is the problem , there must be something or new avenues to take.
                            Here is an example why we are no further forward. I have been trying to get Sativex for years now . through GPs , Consultants, and Health boards. and the weak and pathetic reason I keep getting is , Its not been tested on MND. but keep taking Gabapentin , Diazepan, Brufen etc. So what chance does any treatment have if these walls are still there.
                            Being frank, you are talking about, at best symptom dampening drugs. Sativex is hardly a game changing treatment. Don’t waste your time.

                            With regards to “disease altering drugs” the trial for Tofersen for SOD1 genetic linked MND is the sort of trial that is most promising right now. It’s targeted and measurable unlike many other current drugs.

                            Yes it’s not the majority of MND but if we can break one form, the dam will break for both scientific but more importantly financial reasons. We would have shown that MND is treatable and industry money will flood into the area.

                            Keep optimistic.

                            Comment


                              #59
                              Hi so can i please ask, why are researchers researching for a treatment for inherited MND when that is only 10% of all MND sufferers, surely they should be trying to find a treatment for the majority 90%??

                              Comment


                                #60
                                Originally posted by Wooley View Post
                                Hi so can i please ask, why are researchers researching for a treatment for inherited MND when that is only 10% of all MND sufferers, surely they should be trying to find a treatment for the majority 90%??
                                They are. However, as this disease is so varied we have to target. The best target is those with a distinct cause and where we can attack the fault.

                                These patients provide the best test for any precision treatments because we can both measure any effects and because sadly we can predict their disease progress more accurately.

                                Unless we start small we will never make any headway.

                                The most likely scenario is that we develop a slowing therapy for certain genetic forms. This will probably happen in the near future and gene therapy is the most advanced treatment of any trials globally.

                                Once we find really a effective treatment for 1 form, we will have proven MND is treatable. This will be a game changing moment and research money will flood in from industry for the wider forms.

                                If we scattergun now we will make no progress ever. History is proof of that.

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