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#United2EndMND - Your URGENT help needed

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    #16
    Sadly they just want all of us to die as soon as possible. Truth hurts. x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #17
      Originally posted by Graham View Post
      Hi Lee,

      I don't imagine any number of our MPs will be able to influence the outcome as previously.

      What may influence are the cold hard facts: -

      1. People without MND are not a burden on Government.

      2. Who on earth does your new vehicle belong to??? GSK or anyone? Without a clear commercial proposition it could do more damage than good with players in the market seeing favouritism.

      Morning Graham. Two good comments. Of course there is a short answer and a long answer to both. Some shortish answers...


      1. We are clearly not the burden of cancer and dementia, but we are significant especially as MND hits in the prime of life. But we accept that this not an economic case on the burden benefits alone, although the fact that we spend more on 1 benefit alone (PIP) than we do on research is quite staggering. It is a commendable aim to even reverse this, almost 'care not cure' approach. Our proposal is both a humanitarian case but more importantly an economic case on industry attraction to the UK. That leads me to..

      2. This Institute is not going to be owned by Industry. We are working with industry (all of the global players) to bring it to fruition but we recognise, and they do, that it must a shared asset. There are many working examples of such structures, eg the Dementia Institute jointed funded by government and charities, the Francis Crick Institute etc etc.

      At the very heart of the MND treatment challenge is our underfunding. Up until now core science has dominated, with the need for competitive tenders to allow targets, pathways, and modes of action to be discovered. Each project has been funded individually, even some projects which may result in critical infrastructure for the community, eg MND Biobank, register, biomarkers etc. As a result all of these components struggle to carry on when the short term grants expire. So we have almost a satellite of dispersed capital 'spluttering' on empty.

      Now, in 2021, MND is translational ready. Ie we are ready to speed the pipeline, screen drugs etc etc. To do this we need a national infrastructure and this is what the Virtual MND Translational Research institute is aiming to be.

      And there is so much more to say, such as the U.K. patient community, which is something industry desperately needs easy access to in trials. We have possibly the most integrated and willing community worldwide. We just need infrastructure. And without doubt the U.K. leads the world in MND research.

      Underlying all this is the brutal fact that we only receive less than Β£5m a year in targeted research funds.

      Finally, we are not doing this in isolation. The government itself has recognised our needs in its own Life Sciences Vision published in July this year. There are sections in here that, perhaps just perhaps, have been written in response to our proposal.

      https://www.gov.uk/government/public...ciences-vision

      It is well worth a read.

      Best wishes

      Lee (aka Onein300)

      Last edited by Onein300; 11 October 2021, 09:49.

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        #18
        Nonsense Matthew.

        Think of new members for God's sake!

        Doug

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          #19
          Believe what you like but do not insult me. Like I put truth hurts. I demand an apology.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #20
            To be honest I'm beginning to think everyone is a burden on the NHS. But that might just be me 😀
            when i can think of something profound i will update this.

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              #21
              Sending my letter today. I do believe there's strength in numbers - MP's have to respond to constituents - so the more letters sent the better.

              Anyone with a terminal or long term condition could be viewed as a 'financial burden' on the state therefore a cure or substantial treatment for MND is beneficial to said state. In human costs why would any power choose to leave so many people struggling to live with little hope. There will be cure - a concerted effort is required to 'speed up' the process.

              Anyone just reading the posts on here could also send a letter- let our often muted (literally)voices be heard!!!

              We live in hope.
              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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                #22
                Originally posted by LindaB View Post
                Sending my letter today. I do believe there's strength in numbers - MP's have to respond to constituents - so the more letters sent the better.

                Anyone with a terminal or long term condition could be viewed as a 'financial burden' on the state therefore a cure or substantial treatment for MND is beneficial to said state. In human costs why would any power choose to leave so many people struggling to live with little hope. There will be cure - a concerted effort is required to 'speed up' the process.

                Anyone just reading the posts on here could also send a letter- let our often muted (literally)voices be heard!!!

                We live in hope.
                Exactly!

                This is a war of attrition. Grind grind grind.

                We sense that we are winning from various conversations, but as they say, it's not over yet.......

                The essence is that we have a costed, deliverable and supported proposal. This is not just a give us Β£50m. We know exactly what we will do with it.

                Thanks for your support Linda.

                Lee

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                  #23
                  I've now emailed my MP Lee. Thanks for your persistence mate​​​

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                    #24
                    Originally posted by Gordan1111 View Post
                    I've now emailed my MP Lee. Thanks for your persistence mate​​​
                    Thanks Gordon. Please feel free to share. Noise is important.

                    Comment


                      #25
                      ive done it and passed it on to family to do the same.

                      im thinking i could email with regard to suitable housing 5 month wait for a wheel chair and any other items.

                      come on everyone we can do this
                      when i can think of something profound i will update this.

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                        #26
                        Well done. I will do mine and ask family also. Mnd costs the NHS billions. My liquid riluzole is Β£1200 a year. Add on therapist, liquid food, adaptions etc. We have never had a better chance than now to ask government for funding.

                        I share my journey on Facebook and I've had many people say they didn't even know what mnd was. I choose to get mnd out there as I did not want to do trials.
                        Diagnosed May 2021 bulbar onset als.

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                          #27
                          Originally posted by shelly21 View Post
                          Well done. I will do mine and ask family also. Mnd costs the NHS billions. My liquid riluzole is Β£1200 a year. Add on therapist, liquid food, adaptions etc. We have never had a better chance than now to ask government for funding.

                          I share my journey on Facebook and I've had many people say they didn't even know what mnd was. I choose to get mnd out there as I did not want to do trials.
                          Thank you! yes this is the absolute right and best time to pressure nicely and with constructive solutions for cash.

                          You are not far off when you talk of billions. We have some data from U.K. and from Germany that gives us an expense of about a billion pounds yearly the cost of mnd in the U.K!! Staggering for 5000 people but it is true.

                          Lee

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                            #28
                            Will be done tonight
                            Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                              #29
                              Thanks for more explanation Lee.

                              It is essential to understand Government thinking rather than try to embarrass it.

                              There is a clear economic case, as I have explained.

                              From what you tell us: Humanitarian aid affecting all people of the world. I strongly suggest that you apply to the 'Overseas Aid Budget'.


                              Doug, your knee is jerking again before you think about what you are saying. Probably a habit of a lifetime but we obviously ARE a burden on Government in so many ways.
                              Copyright Graham

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                                #30
                                We live in the wrong country to get money from our government. πŸ˜‰πŸ˜πŸ€—πŸ˜xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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