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#United2EndMND - Your URGENT help needed

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    #1

    #United2EndMND - Your URGENT help needed

    As many of you know we have a major research funding campaign ongoing with the U.K. government. It is the biggest campaign ever, asking for £50m for a critical MND Translational Research Institute in the current spending review. The spending review is critical if ANY money is to be released.

    We visited parliament on the 21st September and met Sajid Javid, the Speaker and many other MPs.

    We have submitted a very detailed and comprehensive spending review proposal well ahead of time, back in July and we have both conversations and connections with very senior political parities and Civil servants in the DHSC, BEIS and the Office for life sciences.

    We are so close now, but we need your help one more time before the spending review.

    In 3 weeks time the review will be complete. Last one for 3 years! If you are living with/affected by #mnd in UK can please consider writing to your MP ASAP asking for them to write to Sajid Javid & Kwasi Kwarteng to support our £50m Research bid. #united2endMND.

    We have provided the template and it's very simple to email your MP.

    Spending Review Action
    https://patientsunited2endmnd.org/2021/10/07/spendingreviewaction/
    As you are aware, the coalition of patients, researchers and 3 MND charities (My Name5 Doddie Foundation, MND Association and MND Scotland) recently delivered a letter to Boris Johnson in support o…


    thanks in advance

    Lee Millads - aka Onein300
    Tags: None
    • 👍 3
    #2
    It's quite charming that you show such trust in Parliament. They consider healthy people as cattle so who knows how they consider us. Just saying. 😁🤗🙏🐧xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment

      #3
      Originally posted by matthew55 View Post
      It's quite charming that you show such trust in Parliament. They consider healthy people as cattle so who knows how they consider us. Just saying. 😁🤗🙏🐧xx
      We all have MND and this is the first time in history that we have submitted a highly detailed proposal to government and we have major influence now.

      We have the 3 major charities, Doddie Weir, Rob Burrow and all the leading U.K. researchers onboard and the team has been working for over a year on the detailed proposal.

      The government even recognise the problems facing translational neurological diseases with their new Life Sciences Vision.We are leading the way here, and the U.K. is THE leader in MND research globally. U.K. scientists have discovered over 70% of the genes implicated, pioneered the most likely first biomarker and all with a fraction of the funds provided in other countries. Now is the time for investment.

      We have already got more conversations going on with the MRC and NIHR than ever before.

      If we don't talk to politicians we will never get the focus we need. We are doing that in leagues now.

      Please support.

      Lee
      • 👍 3

      Comment

        #4
        I do appreciate your efforts and indeed applaud them. The very best of luck my friend. 👍😁🤗🙏xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment

          #5
          Tried downloading the template...which I did....then wouldn't allow me to open.

          Will you be posting this on social media platforms (twitter)?
          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.​​​​​​
          • 👍 1

          Comment

            #6
            LindaB It opened for me, even passed my security scan! xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user            .
            ​
            • 👍 1

            Comment

              #7
              Originally posted by LindaB View Post
              Tried downloading the template...which I did....then wouldn't allow me to open.

              Will you be posting this on social media platforms (twitter)?
              It should be ok. Which one you down loading, patient one? What browser you using? You should be able to see in browser and copy and paste.

              We have not had any reports of issues.

              it's a word template, but the browser should just open as text. It's on Twitter as well.

              I can paste into the forum if you continue to have problems.

              best wishes
              Lee

              Comment

                #8
                I think it's because I used my kindle....will try on my lap top 👍😉 Ellie xx
                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.​​​​​​

                Comment

                  #9
                  Originally posted by LindaB View Post
                  I think it's because I used my kindle....will try on my lap top 👍😉 Ellie xx
                  Arhh yes. Kindle won't support word direct.

                  Lee
                  • 👍 1

                  Comment

                    #10
                    Thanks Lee I'll do tomorrow
                    • 👍 2

                    Comment

                      #11
                      Done

                      Doug
                      Diagnosed April 2017
                      • 👍 1

                      Comment

                        #12
                        I've downloaded the email by copying and pasting into my email and sent it. Keeping everything crossed that it does some good. Needs to be soon for me.
                        Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes
                        • 👍 1

                        Comment

                          #13
                          Hi Lee, thank you so much for the link.

                          I can't seem to get it to load on my tablet but will do it on my laptop when we get home. X
                          • 👍 1

                          Comment

                            #14
                            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.

                            Comment

                              #15
                              People without MND are not a burden on Government.

                              Pardon!

                              Do cancer patients, dementia sufferers, people with arthritis not burden the NHS?

                              Doug
                              Diagnosed April 2017
                              • 👍 2

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