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#United2EndMND - Your URGENT help needed

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    #46
    I promise I wont Graham.

    Love the video.

    Love forever denise xxx
    when i can think of something profound i will update this.

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      #47
      I think Lee will have a job on his hands making sure that the money doesn't get misappropriated if you are successful. It has been highly frustrating the number of times that money has been wasted. Good luck and have a great day!

      Love and hugs forever xxxx
      Copyright Graham

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        #48
        Thank you all for your support with the charity coalition bid to government.

        If you haven’t read the bid, it is quite a digestible 26 pages and you can download from here.

        https://www.mndassociation.org/app/u...sion-final.pdf

        The proposal details the outline of the governance of the new virtual institute which would bring together vital infrastructure and the leading researchers.

        Currently the U.K. government contribute about £5m to Targeted MND Research annually. The 3 main charities in the coalition (MND Association, MND Scotland and the My name is Doddie Foundation) contribute in excess of this yearly.

        We need this step change in Research funding to capitalise on the massive progress that has been made by scientists in the U.K.

        Thank you again. The awareness raised in government has been amazing and with the support of Rob Burrow, Doddie Weir and Stephen Darby our voice has been amplified.

        best wishes
        Lee
        Last edited by Onein300; 23 October 2021, 06:17.

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          #49
          All,

          As you are aware, Doddie Weir, Rob Burrow and Stephen Darby are actively working with patients, leading researchers and the 3 main charities on #United2endmnd.

          The coalition was formed at a time when research into MND had reached a translational time. By translational we mean, time to rapidly move forward in light of many base neurodegenerative MND science advances that now underpin our understanding of the disease.

          You could liken the time to all the technologies for building a car have now been prototyped and we are ready to build a car or more precisely a whole load of cars, in a factory.

          To move forward, our researchers need a solid infrastructure in the U.K. to trial treatments, continue base science and discover drug candidates.

          The coalition is exactly that. A coalition of all the key players in U.K. MND science.

          Our spending review bid for the budget this week, which we submitted in July is well worth a read. It is very detailed but only 26 pages long and quite a straight forward document.

          We are asking for a £50m government investment to build a new MND virtual Insitute which will have its own advisory science board and governance. The intention is that it would be funded directly by government, charities and industry. It will NOT be managed by any one charity alone, and the charities would still continue their vital work including care, campaigning, research as well as investing into the institute.

          For an overview of the proposed governance, please see pages 19 to 24 of the proposal.

          https://www.mndassociation.org/app/u...sion-final.pdf

          To support the proposal submission the coalition has been working behind the scenes extensively. We have active discussions in motion with all parties, government Ministers, MPs, Civil service and Industry players, which to my knowledge and life with MND, are the most comprehensive that ever been held.

          Along with recent promising developments in research, all of this activity, which has seen patients, researchers and different charities unite for the first time to ask for enhanced government funding, serves to underline current optimism for breakthroughs in MND research.

          The awareness that has been raised, not least with the help of Doddie, Rob and Stephen has taken MND from a lesser known neurodegenerative disease to one that it is at the forefront, both in Parliament and in the public eye.

          Like this disease we live with, we need to be relentless in campaigning for research funding and we are on the road for the long term.

          Best wishes
          Lee (aka Onein300 on Twitter and blog)

          Comment


            #50
            Many thanks Lee Onein300 ....so good to know people are fighting this cause ✊🏻
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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              #51
              Originally posted by LindaB View Post
              Many thanks Lee Onein300 ....so good to know people are fighting this cause ✊🏻
              Linda, thanks. It is not easy, far from it, and there will be bumps along the road, bad ones.

              Lee

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                #52
                What road doesn't have that?
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #53
                  Thank you so much Lee Onein300 .for your hard work and for the information x

                  Comment


                    #54
                    Onein300 Thanks Lee x
                    Diagnosed July 2020, ALS bulbar onset.

                    Comment


                      #55
                      thank you for your hard work Lee. I'm sharing my journey on Facebook so that's a few more hundred that are more aware. Fight the good fight💪
                      Diagnosed May 2021 bulbar onset als.

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                        #56
                        Sadly and a crushing disappointment but perhaps not too surprising, The United To End MND campaign to persuade the government to invest £50million in targeted MND research failed to make the cut in today’s Budget announcements. No doubt the fight will go on to convince decision makers that Ministers’ claims of £15m pa being spent on MND research is mistaken and more funding is essential to find a breakthrough to a cure.

                        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                          #57
                          Thanks for highlighting this John D xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #58
                            Guys,

                            I just wanted to comment on the budget statement yesterday. We have, as you can see, been expressing a disappointment publicly that MND wasn't mentioned yesterday. Our grand hope was of course a statement of support which would have been a done deal.

                            In fact no disease investment was mentioned, but a clear increase in science and health budgets.

                            However, as part of the spending review we have have been working with ministers, and importantly senior civil servants in several departments.

                            These discussions are continuing and remain unaffected by yesterday's speech.

                            We, of course, would have liked it to have been a done deal yesterday but the campaign continues at the same speed, if not faster.

                            Take a look at our website

                            patientsunited2endmnd.org
                            We are posting updates to the site as we progress.

                            very best wishes

                            Lee (aka Onein300)

                            Comment


                              #59
                              Lee may be intending to post this but just in case....

                              New post on We are Patients United2EndMND
                              Statement from PatientsUnited2EndMND following the Budget 27/10/21 The United To End MND campaign is calling on the government to invest £50million in targeted MND research. The following is a statement from the coalition members following the announcement of the Autumn Budget and Spending Review 2021: We are disappointed that our submission to the spending review for a […]
                              Read more of this post
                              onein400 | October 28, 2021 at 8:48 am | Categories: NEWS | URL: https://wp.me/pdgioX-134
                              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                              Comment


                                #60
                                Just a thought but did any specific ailments get mentioned? I'm thinking Cancer, testicular cancer, common cold or flu to name a few.
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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