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£50 Million for MND research

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    #91
    I am not the only one being confused by your communication. Assume that people, including me, don't read or try to comprehend the minutia of your links for your project.

    When is your project expected to start?

    What can we expect from your project during the course of 2022?

    It sounds like it would be straightforward for this forum to have a predictive text plug-in? Please have a word with your mates at the MNDA. I and others struggle terribly.
    Copyright Graham

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      #92
      Graham,

      I am trying to provide you with information. I suggest you set aside some time to read the details. It is indeed comprehensive.

      We have provided multi layered documents including one pager summaries here

      https://patientsunited2endmnd.org/documentation/

      You would get a lot of benefit from reading the ‘drill down’ document of the proposed institute describing the 3 key aims here

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

      In 2022 as funds are released, projects such as ‘better outcome measures’ will become possible. But I repeat we have only just received the campaign win so keep an eye on the websites for updates. I will also post on here.

      I don’t think you quite understand the magnitude of the capability that could be enabled with this record funding.

      This is ALL aligned at bringing forth effective treatments as soon as possible. This is not targeted at day to day Living with mnd Research which will continue to be funded via standard research funding.

      I have reiterated that any issues with this forum and other matters you have with the MNDA you raise directly with the MNDA.

      I am sorry that I appear to be confusing you but others are asking for detail.

      With regards to your issues we are not making any headway discussing here, so please raise directly and I will not comment further.

      I will only comment on the new proposals capability intentions.

      Lee





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        #93
        Glass half full eh? 🍷😉😂🤗xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #94
          Originally posted by matthew55 View Post
          Glass half full eh? 🍷😉😂🤗xx
          Well half empty helps no one does it?

          Comment


            #95
            But it shows room for improvement. 🍷😁😊🤗xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #96
              You continue to be defensive Lee. Think of my comments as that of a non-executive director trying to see how your project could fail. We all want you to succeed!

              Not having a view of the management accounts is a major problem.

              You are correct in saying that IT has moved on immeasurably but I did my first own company website in 2000 but I didn't charge the company that much but I could have. Similarly, the MNDA forked out £400,000 for a database in recent times and I am pretty certain that my app's database is far more extensive!
              Copyright Graham

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                #97
                Graham,

                I am trying to answer your questions and you are failing to understand that I agree with you that we need governance and it will be there.

                Any comments that you keep repeating about access to accounts are irrelevant. They don’t exist yet!!

                The monies are not going to the MNDA. Have I not made that clear?

                We are at the stage where we have the once in a lifetime government commitment. A new entity is likely required to receive the funds. The coalition is actively working on it with government.

                I started this thread to keep a part of the community that doesn’t use face book et al to keep people informed. I will still do that.

                Your references to alleged MNDA spending show you apparently have more exposure than I!

                I further repeat please take your issues with the MNDA up with them directly.

                Our debates on here are not helping anyone.

                Please support and motivate the community.

                We have no time for negativity.

                Lee
                Last edited by Onein300; 11 December 2021, 10:48.

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                  #98
                  I for one thank you Lee I certainly don't use Fools Book. 📙📖😉😁xx0
                  Last edited by matthew55; 11 December 2021, 11:29.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #99
                    Frustrating, frustrating, and frustrating.

                    Whenever and whatever.

                    Maybe next year let us know if we are still here. I'm heading for a stiff whisky from the cabinet!
                    Copyright Graham

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                      TBH 50 million is a drop in the ocean considering the multi millions used in pharmacology. We really should do the English thing and die quietly without fuss. 😉😂😁👍xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        'Do not go gentle into that good night...rage rage against the dying of the light' (Dylan Thomas)

                        The disability and charity groups who do well all have loud and strong voices and advocates. More power to the campaigners who have managed to secure the funding✊🏻👏🏻👏🏻
                        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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                          Thanks Linda.

                          The David Dimbledy lecture was interesting in that just a few expert people can make all the difference. Money is important, however intelligence is what we really need.
                          Copyright Graham

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