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

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    matthew55
    Forum Member

  • matthew55
    replied
    I know a cure, albiet a permanent one, and that needs a petition too. 😉

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  • bilvers
    Forum Member

  • bilvers
    replied
    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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  • Gordan1111
    Forum Member

  • Gordan1111
    replied
    x

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  • Ellie
    Forum Member

  • Ellie
    replied
    Thanks Gordan. x

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  • Gordan1111
    Forum Member

  • Gordan1111
    replied
    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
    ​​it do much good. But every little seed planted helps

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  • Onein300
    Forum Member

  • Onein300
    replied
    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
    Onein300
    Forum Member
    Last edited by Onein300; 11 April 2021, 16:43.

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  • Deb
    Forum Member

  • Deb
    replied
    Such good points Lee and thank you Mary.

    Its emotive and yet motivating to think of people living today who are going to develop MND and aren't aware. Im going to encourage Facebook friends to share again x

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  • Mary C
    Forum Member

  • Mary C
    replied
    Well said Lee
    Best wishes
    Mary

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  • Onein300
    Forum Member

  • Onein300
    replied
    And I forgot to say.

    This campaign is from all of the three major charities, as one, with patients and leading researchers. Not just the MNDA.

    The petition broke through 100k last night because of the entire community pushing heavily, including Mary.

    Thanks Mary.

    We would like to get 200,000 signatures. Why?

    200,000 is the number of people alive today in the UK who will get MND in their lifetimes, about 195,000 of them completely unaware as yet!

    But it will happen as sure as eggs is eggs, and we want to stop it killing and being simply a disease that you take an early pill or basic treatment for.

    Lee

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  • Gordan1111
    Forum Member

  • Gordan1111
    replied
    Well done everyone in promoting petition. Way I see it Lee and Graham are two sides of same coin. Cogent and valid. Both help get it spinning

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  • Onein300
    Forum Member

  • Onein300
    replied
    Originally posted by Graham View Post
    Hi Richard,

    I have been on this forum since it was created and then on the Build-UK site before this for a year or two. Every now and then there is a lot of excitement about a potential treatment, or a plan to find biomarkers, or a ground-breaking development, or a petition, or a Charter to benefit people with MND and it is all whipped up by our MNDA.

    The upshot of all the hype to date is... (wait for it)... Riluzole, that barely works, if at all!

    Our MNDA has a highly respected (paid) R&D, yet it refuses to stick its neck out and inform us of what potential treatment will work! IT IS ALWAYS MORE RESEARCH REQUIRED.

    This pandemic has brought to light what is possible if there is any urgency.

    Of course I wish the campaign well, however I have seen it all before. It is time to DEMAND RESULTS!

    Graham
    Graham,

    Morning. I do have a question for you below, but first.....

    Yes it is frustratingly slow research isn’t it? Moreover the frustrating failure of over 60 major trials is not good for the scientific community.

    They feel bad I know for us, and I certainly would have been scrapping my eyes out if I had worked in such a role for many years.

    However, this research has been possibly the toughest in all human disease, a disease which is so complex and not visible like a tumour.

    The core fundamental issue is funding, and now at a pivotal time we need to fund it properly. Now is the right time. Have a read of the briefing to see why.

    One point you make is that the “MNDA will not stick their neck out regarding what treatments may work?”

    Well they won’t until treatment(s) have been proven. We do not expect them to. If they had given comment on the multitude of prospective treatments, some highly commercial and some largely pushed only by social media, over the last 10 years we would have been condemning them for doing so in light of the way things turned out for every single one of them.

    But is there something specific you refer to re “prospective” treatments?

    The MND Association are truly world leading in research interpretation, allocation of limited funds and global leadership. The annual symposium is 100% an MNDA founded and owned event. It is the gel that welds the worldwide mnd research community together.

    Keep rocking and don’t loose faith.

    Lee

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  • richard
    Forum Member

  • richard
    replied
    Graham
    Forum Member
    Graham Thanks Graham, much appreciated

    Richard

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  • Graham
    Forum Member

  • Graham
    replied
    Hi Richard,

    I have been on this forum since it was created and then on the Build-UK site before this for a year or two. Every now and then there is a lot of excitement about a potential treatment, or a plan to find biomarkers, or a ground-breaking development, or a petition, or a Charter to benefit people with MND and it is all whipped up by our MNDA.

    The upshot of all the hype to date is... (wait for it)... Riluzole, that barely works, if at all!

    Our MNDA has a highly respected (paid) R&D, yet it refuses to stick its neck out and inform us of what potential treatment will work! IT IS ALWAYS MORE RESEARCH REQUIRED.

    This pandemic has brought to light what is possible if there is any urgency.

    Of course I wish the campaign well, however I have seen it all before. It is time to DEMAND RESULTS!

    Graham

    Leave a comment:

  • Ellie
    Forum Member

  • Ellie
    replied
    Sterling job in raising the Petition's profile, Mary x

    Leave a comment:

  • Bowler
    Forum Member

  • Bowler
    replied
    Originally posted by Mary C View Post
    So pleased that the petition reached the 100.000 target.For many of my friends it raised awareness and several are thinking of fundraising for MND association .
    I am so Surprised how quickly the target was achieved.
    Best Wishes
    Mary
    Thank you for all your efforts in raising awareness.

    Leave a comment:

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