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UK petition to get government to put money into research for MND

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    #91
    Yes the brutal fact that there are probably about 195,000 unaware that they will develop it is quite sobering. Especially for a disease with no treatment! Some have just been born, some are children, teenagers, mothers, fathers and grandparents.

    But they are all breathing today.

    Another interesting fact is that MND kills more a year in the UK than HIV ever did, even at the peak of the devastating and horrific AIDS crisis in1995!

    MND consistently is killing 2000 a year without an effective treatment.
    HIV killed 1200 at the peak of the crisis in 95/96 and then plummeted once therapies arrived in late 1990s. Currently HIV still kills about 300 per year, late diagnosis. But typically HIV is now a chronic disease that is largely survivable.

    MND needs the same outlook. We need to make it a chronic survivable condition.

    Take a read of my blog Onein300.com

    and this article on the campaign

    https://onein300.com/2021/03/25/rais...uk-government/

    best wishes all

    Lee
    Last edited by Onein300; 11 April 2021, 15:43.

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      #92
      I previously said I'd written to my MP (that had signed petition) And said I'd inform if got an answer. Well i did. I don't expect it'll
      โ€‹โ€‹it do much good. But every little seed planted helps

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        #93
        Thanks Gordan. x
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

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          #94
          x

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            #95
            The petition did pass the 100000 requirement to obtain a potential discussion in parliament so fingers crossed for that. I wrote to my MP to complain about the lack of MND Smart in East Anglia, I have also been pushing my neurologist in Cambridge too and he understood my view that East Anglia is a 'black hole' for research at the moment. Having been dealing with this condition for a year now, my drive is to find a cure but I am so disappointed to not be accessible to any trial due to my location.

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              #96
              I know a cure, albiet a permanent one, and that needs a petition too. ๐Ÿ˜‰
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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