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#United2EndMND - Your URGENT help needed

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    LindaB
    Forum Member

  • LindaB
    replied
    Many thanks Lee
    Onein300
    Forum Member
    Onein300 ....so good to know people are fighting this cause ✊🏻

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  • Onein300
    Forum Member

  • Onein300
    replied
    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 Β£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)

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  • Onein300
    Forum Member

  • Onein300
    replied
    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 Β£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
    Onein300
    Forum Member
    Last edited by Onein300; 23 October 2021, 06:17.

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  • Graham
    Forum Member

  • Graham
    replied
    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

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  • denise
    Forum Member

  • denise
    replied
    I promise I wont Graham.

    Love the video.

    Love forever denise xxx

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  • Graham
    Forum Member

  • Graham
    replied
    Don't mention the corruption over the years at the MNDA Denise, I did once but I think I got away with it...

    https://www.youtube.com/watch?v=yfl6Lu3xQW0

    Love and hugs xxxx

    Leave a comment:

  • denise
    Forum Member

  • denise
    replied
    I know. Poor man. Our democracy is threatened.

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  • Ellie
    Forum Member

  • Ellie
    replied
    Crikey, who'd choose to be an MP theses days...

    RIP Sir David Amess.

    Leave a comment:

  • Deb
    Forum Member

  • Deb
    replied
    Well done Denise..Go girl ! You will be just great!

    I know funding for research is vital but like you i feel very strongly that home adaptations and equipment should be immediate following diagnosis. It should be unthinkable that people with a life limiting disease are not comfortable and safe.

    I know our MP by sight as I used to work at the local school and he always replies to my emails. Its possibly because he's fed up of me !

    Good Luck lovely xxπŸ˜˜πŸ€—πŸ€—

    Leave a comment:

  • LindaB
    Forum Member

  • LindaB
    replied
    Originally posted by denise View Post
    Seriously if anyone has anything I could bring up. I'm going with lack of suitable housing, long wait for equipment and alterations.

    Come on guys help me out while I have an opportunity. 😘
    Maybe quote
    Onein300
    Forum Member
    Onein300 post?

    Leave a comment:

  • denise
    Forum Member

  • denise
    replied
    Seriously if anyone has anything I could bring up. I'm going with lack of suitable housing, long wait for equipment and alterations.

    Come on guys help me out while I have an opportunity. 😘

    Leave a comment:

  • Ellie
    Forum Member

  • Ellie
    replied
    Was going to say a Fendi handbag but on second thoughts, stick with the Lidl bag, don't want to give the impression you're rolling in it...

    Good luck with it
    denise
    Forum Member
    denise xx

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  • denise
    Forum Member

  • denise
    replied
    Possibly one from Waitrose?! Harrods foodhall? Have to ditch the accent. Jolly good show. Carry on. Chop chop.

    Going to refer back to my email and make some notes. I honestly didn't think anyone would listen!

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  • Ellie
    Forum Member

  • Ellie
    replied
    Originally posted by denise View Post
    Need to speak posh and get a handbag
    True, that plastic Lidl reusable bag just won't cut the mustard. πŸ˜‰πŸ˜˜

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  • matthew55
    Forum Member

  • matthew55
    replied
    To get to be an MP you need to finance yourself and your campaign for one year. That's why rich people are our politicians. It's better than working for a living. πŸ˜πŸ˜€πŸ˜ƒπŸ˜œxx

    Leave a comment:

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