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£50 Million for MND research

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    #76
    Read my posts more carefully Lee.

    You are falling fowl of the forum's 'be kind' rule.

    Further, people seem to be confused between MND Smart and your scheme.
    Copyright Graham

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      #77
      billy106 that is totally out of order
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment


        #78
        Originally posted by matthew55 View Post
        billy106 that is totally out of order
        Agreed
        Richard

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          #79
          Originally posted by Graham View Post
          Read my posts more carefully Lee.

          You are falling fowl of the forum's 'be kind' rule.

          Further, people seem to be confused between MND Smart and your scheme.
          Graham,

          With reference to MND Smart.

          MND Smart is a trial platform, one of a number.

          It will be used by translational projects(s) as time moves on.

          It is, however, one small cog in the lab to patient process. The drug discovery platform, integration and learning from each and every trial requires much much more.

          All mnd Research in the U.K. has been carried out under funding conditions that could be described as ‘barely keeping the lights on’. The headline for the campaign has been the sheer cash (massive injection) but below this there is a comprehensive plan.

          Detail can be found in the second briefing document for United2endmnd in January 2021 here which shows how mnd Smart will be involved.

          https://patientsunited2endmnd.files....-institute.pdf

          within the project documentation so far that can all be found here

          https://patientsunited2endmnd.org/documentation/

          Best wishes

          Lee


          Comment


            #80
            Please can I remind all forum members about the section of the forum guidelines on being kind to all members https://forum.mndassociation.org/forum-guidelines. By using the forum, you have all agreed to these guidelines.
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]

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              #81
              Please remove your offensive posts Matt and Richard.

              The point Billy and I are making is that it is entirely possible for Lee's budget to be appropriated to MND Smart! This is particularly the case if Lee doesn't have sight of the management accounts!!

              And don't ask me, I have my hands full with my comprehensive care app.
              Copyright Graham

              Comment


                #82
                No
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #83
                  Do I apologise for my tone or should i be understood more. Here i am in Lanzarote , supposedly enjoying myself , Rented a villa at more than the cost of the Grant generously given by Mnd Scotland. I turned my head my wife was crying. I asked her what was wrong. She said I seen you struggling through the airport , stopping and going . I wish you would take assistance she said. I must have looked a mess. I thought . But i am so determined to try and have normality in my life without MND effecting me. But it has caught up, Im a wreck , on the breathing machine at night and bouncing off walls during the day. I am an ex serviceman , kept super fit . Now I am slowly being destroyed by MND. My wife is so so good and tolerant of my determination , but angry watching me refuse the Aids available. I Dont want to Die ,I have Children and Grand Children . Please someone produce anything to help us. I do apologise for my tone on this forum but I see nothing happening...Billy .

                  Comment


                    #84
                    I do understand Billy.

                    Thank you for the insight into your life. Keep fighting like the soldier you are. It never gets any easier and we must always be up for the fight.

                    Lee should understand the considerable contribution that you are making in the fight to find a cure and at least offer compensation for your travel expenses if not your time, pain and the hire of your body for trails.

                    Enjoy Lanzarote and maybe others will reflect on the fact that I have only visited my back garden twice in 11 years! We must have considerable mental strength to survive MND. So many just give in.

                    Copyright Graham

                    Comment


                      #85
                      billy106 Billy it took me a long time to accept that I needed help but when I did things became so much easier. Sounds like you have an amazing wife. Remember that whilst it is us fighting this horrible disease our loved ones are suffering from as well in seeing the deterioration of their loved one. I wish you well Billy and all the strength you need.

                      Richard
                      Richard

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                        #86
                        billy106 im ex army and ex police. I echo richard and Graham in fight but accept help. I do what I can but also let my partner help. It makes them feel that they are helping. After all they are on this journey also. Team work xx
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #87
                          Try and enjoy holiday billy106

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                            #88
                            Graham,

                            You appear to have misunderstood the campaign and the new funding commitment. I hope the following helps.

                            This is a ‘government’ commitment to a major investment/national endeavour to accelerate ‘translational’ MND research.

                            The money is NOT going to any MND charity, including the MNDA.

                            Its a new endeavour. The charities will continue to fund research as well and will also endeavour, we hope, to contribute to the new ‘institute’.

                            The governance is yet to be agreed and the government will not issue a penny unless peer reviewed and controlled. You can read about the evolution of the new MND Unit here.

                            https://www.gov.uk/government/news/g...sease-research

                            And to be clear, I have MND and do not work for any charity. I am just a patient who wanted to lobby government to fund our cause more in the light of the government contribution being so low.

                            This is a patient driven campaign that is evolving

                            The funds will not simply be eaten up by any project. This is nothing to do with mnd Smart aside that mnd Smart may be a part of the integration. This is much wider.

                            The funds will not be used for anything other than the translational project(s) and infrastructure proposed within…

                            https://patientsunited2endmnd.files....sion-final.pdf

                            I hope this has resolved any issues you might have with the government intended funding.

                            Lee

                            Comment


                              #89
                              I apologise for getting personal . But I still remember my Consultant telling me Billy the problem with MND . There is not enough people with it for Big Pharma to Pursue a treatment of any Kind. I get the impression theres no money in it for them. Someone tell me Different.

                              Comment


                                #90
                                Originally posted by billy106 View Post
                                I apologise for getting personal . But I still remember my Consultant telling me Billy the problem with MND . There is not enough people with it for Big Pharma to Pursue a treatment of any Kind. I get the impression theres no money in it for them. Someone tell me Different.
                                Billy,

                                Don’t worry I have an extremely thick skin!!

                                With regards to the lack of pharma interest.

                                That could have been the case 20 years ago yes. But the world is a different place for many reasons that are far too numerous to summarise here.

                                They are very interested now, but also don’t assume pharma of the future will have the same business model or be the same size

                                Items like genomic sequencing and analysis are beginning so cheap that personalised medicine is very real. Gene therapies will be most likely the mechanism of delivery for many treatments even for so called sporadic mnd.

                                Patents expiring for other disease drugs and the fact that neurodegenerative disease is now growing to be the main killer and serious long term chronic disease will all drive pharma to be interested.

                                But remember discoveries and advances are most often found/made outside of big pharma by universities etc.

                                Also any treatment for mnd is likely to be life long. As mnd is mathematically as likely as MS but there are only 5000 alive because of its lethalness the numbers that will be living with it will rise dramatically if a slowing treatment is found. MS doesn’t kill and there are 200,000 living with MS in the U.K!

                                There most definitely is a market and treatments for some versions are very close.

                                Technology is the changing business model.

                                It is often good to compare with other technology to get a feel for why things will change.

                                15 years ago to build a website with commerce systems etc etc in with payments cost 100s of thousands of pounds and took many skilled people.

                                In 2021 I can build all of that in my own for pounds and even on a small tablet etc.

                                Lee

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