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£50 Million for MND research

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    #16
    Good afternoon Lee

    I found out about this in an email sent by Sally Light, the CE of the MNDA to all trustees embargoed for midnight last night - this is wonderful news!

    I guess it's now up to the MNDA expert panel of researchers to advise where this is best spent, advising the consortium of MNDA, MNDA Scotland, MyNamesDoddie Foundation and your good selves.
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

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      #17
      Probably new cars, holidays and second homes.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #18
        Originally posted by nunhead_man View Post
        Good afternoon Lee

        I found out about this in an email sent by Sally Light, the CE of the MNDA to all trustees embargoed for midnight last night - this is wonderful news!

        I guess it's now up to the MNDA expert panel of researchers to advise where this is best spent, advising the consortium of MNDA, MNDA Scotland, MyNamesDoddie Foundation and your good selves.
        Andy yes there will be a need for strong governance.

        However, we all know what we want/need to do in the large.

        This is NOT basic science research, as that will still be funded through standard competitive tenders, like any good science.

        This is for key infrastructure to speed drug discovery for new targets, trial and learn both good and bad from every trial. The aim is to move from the current "Go home and get your affairs in order" to "You have MND and I can get you on a trial next week". Of course it won't happen over night, but this is one hell of a boost. And more fundamentally we need the U.K. to be the place that industry comes to, not elsewhere.

        It's hard to explain what traditional research funding might leave behind, but think of it this way. Most projects are time limited, and any assets that they may create can be starved of funding afterwards. All those great integration biobanks, register and more etc are run on a shoestring.

        This is like more like a factory approach.

        Lee
        Last edited by Onein300; 14 November 2021, 14:29.

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          #19
          I've said this before but if they don't know what causes it how are they going to stop it?
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #20
            Originally posted by matthew55 View Post
            I've said this before but if they don't know what causes it how are they going to stop it?
            Thats science for ya!!

            Precise causation can be helpful but it is not critical to treat a disease.

            Eg heart artery blockages. We can fix without knowing the cause.

            For our disease there are almost certainly upstream and downstream processes that progress the disease and also make it a waterfall.

            Stopping one, or preventing or removing the damage caused by that process could stop the disease.

            The most knowledge we have re causation is for SOD1 mediated disease. We know the trigger. But we have more knowledge on other ‘causes’ triggers. And we know the disease pathology. All of this was not known 10 years ago.

            Processes kicked off by a gene implicated disease case could still be targeted for non gene modulated disease as they might be downstream of the process for that disease presentation.

            Neuroinflamation is a major target for eg.

            To be honest a treatment that stops the disease, or even radically slows, is a cure in my eyes.

            Knowing a cause is more useful in prevention. That’s a whole different subject.

            Lee

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              #21
              A zombie apocalypse is one possible outcome. 😉😁😅😎xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #22
                Originally posted by Onein300 View Post
                To be honest a treatment that stops the disease, or even radically slows, is a cure in my eyes.
                Maybe in PLS but I doubt anyone with classic ALS would deem their condition 'cured' if it were slowed down, even radically.

                A cure is a cure, pure and simple, not a mitigation.


                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                  #23
                  Originally posted by Onein300 View Post

                  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
                  My comment probably came out sounding more negative than intended. This decision is great news and I look forward to the work that will come out of it. I just hope the government will follow through with the cash swiftly. But if there are any delays it looks like there are many effective campaigners who will be on the case.

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                    #24
                    Hopefully we'll start to see many more drug trials that more of us can take part in...🙏
                    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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                      #25
                      Originally posted by Onein300 View Post

                      Andy yes there will be a need for strong governance.

                      Lee
                      And it has started already!!! (Bloody unbelievable)

                      Lee, please ensure that the money spent updating this forum has provision for a Facebook style predictive text plug-in so that people with real MND may actually use the forum!

                      (I am watching)
                      Copyright Graham

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                        #26
                        Originally posted by Graham View Post

                        so that people with real MND may actually use the forum!
                        Graham I’m sure you didn’t mean it but the above comment implies that many of us who use the forum don’t have MND. Please explain what you mean by REAL?

                        I cannot stand or walk, symptoms are spreading. I was diagnosed with MND a few years ago. Am I not someone with REAL MND?
                        Richard

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                          #27
                          Strange that I can use a predictive keyboard on the forum but maybe I am just pretending to have real ALS 🤭🤭
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                            #28
                            Happy Days me being mute isn't REAL! 😉🤣😁😎xxx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #29
                              I'll ring you mate and we'll have a chat 🤥😍😍😘
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                                #30
                                Hi
                                Last edited by MNDConnect; 16 November 2021, 08:59. Reason: Removed due to breaking forum guidelines
                                Copyright Graham

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