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    £50 Million for MND research

    In todays papers the Sunday Express says Boris has agreed for £50 million for MND research. However it’s not in any other paper nor on the BBC.

    Any views as to if it’s actually true?
    Last edited by richard; 14 November 2021, 09:34.
    Richard

    #2
    Ammar Al-Chalabi was on BBC Breakfast this morning. Congratulations to the campaigners!

    Though the words "pledged by Boris Johnson" do make me a bit apprehensive ...

    Comment


      #3
      It's true.

      It was on BBC as well.

      This is major news as it is not just £50m, it will drag much more from industry and other parties.

      This is the end of the first stage of a process that started back in December 2019, and has involved discussions both politically but also with those senior civil servants that actually make the science decisions.

      Just taking it in. Today is a cause for major celebration, celebration, which we are so short of in living with MND.

      This is like about 7 ice bucket challenges rolled into one in terms of pure hard cash!

      Lee

      Comment


        #4
        Originally posted by Peanut View Post
        Ammar Al-Chalabi was on BBC Breakfast this morning. Congratulations to the campaigners!

        Though the words "pledged by Boris Johnson" do make me a bit apprehensive ...
        Boris has made a statement that is consistent with his ambitions on science. This has raised us from below the radar for science to firmly above.

        This is the start of a new funding model desperately needed for U.K. science.

        Lee

        Comment


          #5
          Woopie doo. Peanut anyone? 😉😁😋😂xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Woohoo and much Yayness! We have been noticed...
            Hi, I'm Eddie.
            Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
            Still walking and talking, and wondering what the future will bring.

            Comment


              #7
              This is great news !.... I just hope Boris gets his finger out and makes the funding available ASAP.
              It might not help me but there’s hope for sufferers in the future 🤞🤞

              Comment


                #8
                Obviously still a long way to go but some really good news for once. Brilliant.
                Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                Comment


                  #9
                  Congratulations Lee and all the team!

                  Doug

                  Comment


                    #10
                    Great News ! Thank you and congratulations to everyone who has worked so hard for this. X

                    Comment


                      #11
                      Well done to all the campaigners, petition signers & supporters 👏🏻✊🏻👍🏻👏🏻
                      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.​​​​​​

                      Comment


                        #12
                        Congratulations Lee and all who have campaigned . Now let's see action 🙂

                        Comment


                          #13
                          Just heard about it on local radio news. Boris the buffoon says six people die every day from MND.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            Originally posted by matthew55 View Post
                            Just heard about it on local radio news. Boris the buffoon says six people die every day from MND.
                            And he is correct. It's about 1900 to 2000 per year in U.K. So 5 or 6 per day.

                            lee

                            Comment


                              #15
                              Originally posted by Derbyram21 View Post
                              Congratulations Lee and all who have campaigned . Now let's see action 🙂
                              Absolutely. The money will come on board quite quickly I suspect and we are already working new collaborations.

                              The key tenant of the government's science superpower vision is detailed here..

                              https://assets.publishing.service.go...ision-2021.pdf

                              and this highlights in particular the severe lack of funding for 'translational science' for neurodegenerative diseases. It's almost written for us!

                              Currently researchers would have to apply to over 10 funds to achieve what this single commitment will now do! It would otherwise take years just to write the applications without any actual research being done.

                              Of course, this is just step 1, but a commitment to give more than 7 (seven) times the funds raised in the ice bucket challenge here is major boost!!

                              We will of course be watching for back sliding!

                              The IBC moved research on amazingly.

                              Lee
                              Last edited by Onein300; 14 November 2021, 14:54.

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