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Thread: 1,000,000 signatures for spinal cord injury

  1. #431
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    We shouldn't be interested in who has the worst this or that. My father died in 1970 from lung cancer; several others of my family or in-laws have been affected, and died.

    The real point I was trying to make is this: it's a numbers game. We are told that world wide there are 2.5millions with sci. In the UK alone, 20millions are affected, in one way or another. As both my district nurse, and the tvn who has been looking at my obdurate sacral sore, both say sci research in the UK just isn't fashionable. Talk to your GP, your spinal unit about cure: they damn well no not want to know; they glaze over and go mmm!
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  2. #432
    Quote Originally Posted by chris arnold View Post
    We shouldn't be interested in who has the worst this or that. My father died in 1970 from lung cancer; several others of my family or in-laws have been affected, and died.

    The real point I was trying to make is this: it's a numbers game. We are told that world wide there are 2.5millions with sci. In the UK alone, 20millions are affected, in one way or another. As both my district nurse, and the tvn who has been looking at my obdurate sacral sore, both say sci research in the UK just isn't fashionable. Talk to your GP, your spinal unit about cure: they damn well no not want to know; they glaze over and go mmm!

    In the last 4 days a further 5000 people have signed the petition - we are now at over 15,000 - so there is support out there, we just have to tap into it. There are no doubt other and better ways of making a point about SCI research but I still think that this petition could be a valuable tool if we can get nearer our amended target of 100,000. Such a petition has not been done before, IMO it's worth pushing it to see what can happen.

  3. #433
    This video has made a lot of Danes sign. Feel free to share.
    (I made the music and the video 2 years after my accident c5/c6)

    Video
    Last edited by topperf; 02-21-2012 at 08:28 AM.
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

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  4. #434
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    Quote Originally Posted by carbar View Post
    In the last 4 days a further 5000 people have signed the petition - we are now at over 15,000 - so there is support out there, we just have to tap into it. There are no doubt other and better ways of making a point about SCI research but I still think that this petition could be a valuable tool if we can get nearer our amended target of 100,000. Such a petition has not been done before, IMO it's worth pushing it to see what can happen.
    Good luck! I have signed petitions, and let's hope they hit they mark.
    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  5. #435
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by carbar View Post
    In the last 4 days a further 5000 people have signed the petition - we are now at over 15,000 - so there is support out there, we just have to tap into it. There are no doubt other and better ways of making a point about SCI research but I still think that this petition could be a valuable tool if we can get nearer our amended target of 100,000. Such a petition has not been done before, IMO it's worth pushing it to see what can happen.
    Dr. Young posted this link a few years ago in the Advocacy forum. I think it is good reading. http://www.thedailybackground.com/how-to-write-congress/

    It has some valuable advice about online petitions.

  6. #436
    A recent post on the petition site:

    "The son of a best friend had a spinal cord injury 2 1/2 years ago. He just passed away very unexpectedly 2 months ago because he got pneumonia but didn't know he had it since he couldn't feel anything or cough. He spiked a high fever that put him into a coma. After going through rehab he played on a quad rugby team and was close to graduating from Purdue University when he passed away. His strength and outlook and his parents' commitment to his care was inspirational to everyone. Please help find a cure for spinal cord injuries to spare another victim and another family from going through what my friend has gone through."

  7. #437
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by carbar View Post
    A recent post on the petition site:

    "The son of a best friend had a spinal cord injury 2 1/2 years ago. He just passed away very unexpectedly 2 months ago because he got pneumonia but didn't know he had it since he couldn't feel anything or cough. He spiked a high fever that put him into a coma. After going through rehab he played on a quad rugby team and was close to graduating from Purdue University when he passed away. His strength and outlook and his parents' commitment to his care was inspirational to everyone. Please help find a cure for spinal cord injuries to spare another victim and another family from going through what my friend has gone through."
    Good point. Some posts have suggested that with current treatment, life expectancy of SCI is about the same as for non-SCI. I feel the problem with such statements is that few SCIs die from SCI directly related causes. For example, I suspect that the death certificate of the young man above will say the cause of death was Pneumonia, not a side-effect of SCI.

    Also, I'll bet Christopher Reeve would still be alive today had he not broken his neck.

    Finally, all high SCIs should ask their doctor about taking a Pneumonia vaccine. It's cheap and lasts up to 10 years.
    Last edited by khmorgan; 02-23-2012 at 11:20 AM.

  8. #438
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    Also, I'll bet Christopher Reeve would still be alive today had he not broken his neck.

    Finally, all high SCIs should ask their doctor about taking a Pneumonia vaccine. It's cheap and lasts up to 10 years.[/QUOTE]

    Good Point!!!!! Pneumonia almost got me a few years ago, it was worse than the original SCI. It should be mandatory, and a flu shot.

  9. #439
    guys, I read your posts. I don't have nigh ailments like breathing problems and spasticity above the injury. this is why I'm hp[ing and pushing for Case Western and Acorda to have a productiv emeeting in April. Dr Silver of Case Western thinks that chase could provide benefits to those of us who are on vents. Other benefits might provide all of us with benefits like bowl and bladder restoration and others. We must push for trials that might bring benefits to those on vents. I am pushing as hard as I can as well as others on thsi board. there is hope and it's coming.

    anthony

  10. #440
    The petition is now closed. It reached a total of 16,611 signatures over a period of 4 years.

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