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Thread: Hi my name is Lee Millard and I have had MND for 3 years......

  1. #191
    It’s my #mnd #als post! This week, the Olympian dream!
    https://wp.me/p5hqWZ-1VH

  2. #192

    This weekís post

    Afternoon readers, itís my #mnd #als post. This week, the big freeze!
    https://wp.me/p5hqWZ-1WB

  3. #193
    Forum Member nunhead_man's Avatar
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    Thank you - a good read

  4. #194
    Cracking read! Keep up the good work!

  5. #195
    Forum Member Streetwise's Avatar
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    I like the rollover somebody and then reverse bit reminded me of using my Rollator

  6. #196
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    Hi Lee and welcome,

    I have just had a brief look at your blog and am so impressed. My lovely dad was diagnosed with MND 3 years ago and is in the latter stages. I feel passionately that more information needs to communicated about this awful disease so we can edge closer towards a cause and cure. Thank you so much for your research and blog.

    Jenny xx
    Please support Gordon Aikman in fundraising for more MND research and improved conditions for MND patients throughout the UK: https://www.justgiving.com/gordonaikman

  7. #197
    Afternoon readers from the UK, where we still live in a winter wasteland, but onein400 continues to blog. Yes it’s my #mnd #als blog. This week 2 posts, this one and finally my Opinion update on MND Research.

    https://wp.me/p5hqWZ-1XN

  8. #198
    And my second post for the week. My #mnd #als research opinion update. In the week we lost the most famous person in world who was living with MND, Professor Stephen Hawking, just how close are we to realising a world without MND?
    https://wp.me/p5hqWZ-1ME

  9. #199
    Quote Originally Posted by goldilockz View Post
    Hi Lee and welcome,

    I have just had a brief look at your blog and am so impressed. My lovely dad was diagnosed with MND 3 years ago and is in the latter stages. I feel passionately that more information needs to communicated about this awful disease so we can edge closer towards a cause and cure. Thank you so much for your research and blog.

    Jenny xx
    Jenny,

    Thank you. When I started writing a blog I knew it had to be funny and informative. Whoís wants to read a terminal disease blog?!

    The awareness of MND is our major challenge. A therapy will come, but we need to get the message out by all means that MND is NOT rare.

    A 1/300 lifetime risk means that today in every single school in the U.K, about 3 children WILL without doubt develop MND in their lifetime!! donít know about you, but that ainít rare.

    Itís only defined as rare because of the severe prognosis, ie not many are alive with it. If we had a therapy that doubled the lifetime of sufferers, there would be 30,000 about living with MND in 10 years and more after that!! And bingo not rare.

    So I never use the word rare when talking about MND.

    Best wishes to your father and family.

    Lee

  10. #200
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    Hi Lee
    also
    I am beginning to think that MND is not rare at all. Everyone seems to know someone who has it! The Hospice OT told me this week they are almost helping an epidemic of suffers. Why I wonder? Is it being caused by an environmental problem?

    It is time for the government to become more proactive and provide more money for research. The present focus appears to be on Cancer Research and little else.

    I am sure the drug companies are more interested in having trials for new Cancer drugs because they know they will reap the rewards from a large number of suffers. They seem have a well-organised publicity machine requesting donations for Cancer research.

    How can we mobilise a similar media blitz for MND? We convince more sponsors to trial MND drugs? We need more publicity and public awareness. Perhaps this could begin by convincing something like the Bill Gates Foundation to make a large donation to set the ball rolling.
    We have not had a new drug available for 23 years in the UK !

    Your Blog is great but it needs much wider coverage to get your valid point across. How can this happen? There must be some journalists out there who can help????

    Ann

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