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#United2EndMND - Your URGENT help needed

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  • Onein300
    replied
    Originally posted by EvelynMW View Post
    My MPs reply - complacent or what?


    I am encouraged that almost £288 million has been spent on research into neurological conditions, including MND, in the past decade through the publicly-funded National Institute for Health Research (NIHR). With the NIHR’s annual spending on neurological conditions up by more than £22 million in that period, I remain hopeful that this funding will discover new ways to improve the lives of those diagnosed with MND.

    Over the past five years, the Department of Health and Social Care has spent over £9 million on MND research through the NIHR. Additionally, UK Research and Innovation, through the Medical Research Council, has spent £45 million on MND research over the past five years. This includes research which aims to increase understanding of the causes and genetic mechanisms of MND.

    Thank you again for contacting me on this issue.

    (Jonathon Djangoly)
    Hi there,

    Another classic templated letter with misleading data in. The spend is no where near that!!!

    if you want to write to him again and point him at here…

    https://patientsunited2endmnd.org/targetedfunding/

    This is the truth re funding. Government figures regularly include dementia funding which we don’t get a sniff at.

    We are taking this to Sajid Javid and Kwasi Kwarteng but if you could get mp to write to Kwasi and Sajid that would add to the pressure which we are going to increase.

    Lee


    Leave a comment:


  • matthew55
    replied
    It's easy to spot a politician, they will never answer a question directly ever. 🤔☹️😁🤗xx

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  • EvelynMW
    replied
    My MPs reply - complacent or what?


    I am encouraged that almost £288 million has been spent on research into neurological conditions, including MND, in the past decade through the publicly-funded National Institute for Health Research (NIHR). With the NIHR’s annual spending on neurological conditions up by more than £22 million in that period, I remain hopeful that this funding will discover new ways to improve the lives of those diagnosed with MND.

    Over the past five years, the Department of Health and Social Care has spent over £9 million on MND research through the NIHR. Additionally, UK Research and Innovation, through the Medical Research Council, has spent £45 million on MND research over the past five years. This includes research which aims to increase understanding of the causes and genetic mechanisms of MND.

    Thank you again for contacting me on this issue.

    (Jonathon Djangoly)

    Leave a comment:


  • EvelynMW
    replied
    Wrote to my MP, and got a reply. When i find it, will post the reply....

    Leave a comment:


  • Onein300
    replied
    Yes, but they were but not in any reference to Research funding. Critically dementia wasn’t mentioned and neurodegenerative disease is top of life sciences vision. Life sciences was being invested in. And technically the budget statement is just an agreement to departmental spend not the precise spending of a department.

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  • matthew55
    replied
    Just a thought but did any specific ailments get mentioned? I'm thinking Cancer, testicular cancer, common cold or flu to name a few.

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  • John D
    replied
    Lee may be intending to post this but just in case....

    New post on We are Patients United2EndMND
    Statement from PatientsUnited2EndMND following the Budget 27/10/21 The United To End MND campaign is calling on the government to invest £50million in targeted MND research. The following is a statement from the coalition members following the announcement of the Autumn Budget and Spending Review 2021: We are disappointed that our submission to the spending review for a […]
    Read more of this post
    onein400 | October 28, 2021 at 8:48 am | Categories: NEWS | URL: https://wp.me/pdgioX-134

    Leave a comment:


  • Onein300
    replied
    Guys,

    I just wanted to comment on the budget statement yesterday. We have, as you can see, been expressing a disappointment publicly that MND wasn't mentioned yesterday. Our grand hope was of course a statement of support which would have been a done deal.

    In fact no disease investment was mentioned, but a clear increase in science and health budgets.

    However, as part of the spending review we have have been working with ministers, and importantly senior civil servants in several departments.

    These discussions are continuing and remain unaffected by yesterday's speech.

    We, of course, would have liked it to have been a done deal yesterday but the campaign continues at the same speed, if not faster.

    Take a look at our website

    patientsunited2endmnd.org
    We are posting updates to the site as we progress.

    very best wishes

    Lee (aka Onein300)

    Leave a comment:


  • Ellie
    replied
    Thanks for highlighting this John D xx

    Leave a comment:


  • John D
    replied
    Sadly and a crushing disappointment but perhaps not too surprising, The United To End MND campaign to persuade the government to invest £50million in targeted MND research failed to make the cut in today’s Budget announcements. No doubt the fight will go on to convince decision makers that Ministers’ claims of £15m pa being spent on MND research is mistaken and more funding is essential to find a breakthrough to a cure.

    Leave a comment:


  • shelly21
    replied
    thank you for your hard work Lee. I'm sharing my journey on Facebook so that's a few more hundred that are more aware. Fight the good fight💪

    Leave a comment:


  • Heather R
    replied
    Onein300 Thanks Lee x

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  • Deb
    replied
    Thank you so much Lee Onein300 .for your hard work and for the information x

    Leave a comment:


  • matthew55
    replied
    What road doesn't have that?

    Leave a comment:


  • Onein300
    replied
    Originally posted by LindaB View Post
    Many thanks Lee Onein300 ....so good to know people are fighting this cause ✊🏻
    Linda, thanks. It is not easy, far from it, and there will be bumps along the road, bad ones.

    Lee

    Leave a comment:

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