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

  1. #11
    I think facebook could be a possibility because it seems to be a great way to multiply connections and spread a petition like this. The advantage is that the network is already there to exploit.
    I'm not sure how to set up a special petition-style website either but will look into it.

    I don't doubt for a minute though that this is a great idea that is capable of being pulled off.

  2. #12
    I agree. Facebook is already set up and has that "cause" feature. I can't imagine that it would be too complicated to set up.
    stellar idea!

  3. #13
    It is time for me to learn face book and all the new communication venues. With the new administration it is imperative to gain access. The way the US work is through a PAC, that’s right we need to be able to lobby congress and the administration. Believe it or not it would start right here. If we cannot get people in our own community to agree, the whole ides will become mute.

    I have time and experience and would enjoy the challenge. We need a leader so in order to get the ball rolling I think this is the first objective. Count me in and ready to help in any way needed.
    T6 complete

  4. #14

  5. #15
    Quote Originally Posted by Jesse's Mom View Post
    That looks very interesting and easy enough to start up. I do think though that Facebook might in some ways be better because it has a viral quality to it where word can spread without much effort required by the few individuals that start it. Initial promotion of the cause can mushroom through others passing the cause on. Getting word out through a separate petition webpage would require more administration I think, and much more prolonged active promotion.

    Malibu, it's your idea, but I'd be willing to set it up on Facebook if you like; if you are on Facebook though it is not complicated to do it - it just needs a cause name, a short text about it and outlined goals and then an email contact address so that someone can administer the page. It could be up and running in no time.
    The only disadvantage to Facebook is that not everybody wants to be on it or even knows about it or how to use it - primarily I think it is used by the younger generations.
    A separate site only requires that someone has internet access, without the need to join the facebook network as well.

    A great advantage of a global list of signatures like this is that the total number (not the names) can be used in advocacy for cure research by anyone anywhere.
    Last edited by carbar; 12-01-2008 at 03:32 PM.

  6. #16
    Malibu, it's your idea, but I'd be willing to set it up on Facebook if you like; if you are on Facebook though it is not complicated to do it - it just needs a cause name, a short text about it and outlined goals and then an email contact address so that someone can administer the page.
    Sure Carbar, setup the Facebook way if you want too. I am dunce on Facebook. Actually, we can get there several ways and should use all means possible. Myspace is used by over twice as many people as Facebook, which both totals around 70 million. But how they both interact with people on the net and what differences exist between the two web sites I wouldn't know.



    Freedom from Paralysis was one title we had going on this subject a few years ago. It's not super great; so ideas are welcome any time. A proper title should be the first practical step as you said. The harder parts will be what follows next.



    knowthill, that's cool that you would be so willing and able. I'm the same way in that it starts somewhere but not sure where I am best at. Being in a wheelchair is not what I like to consider myself best at. Maybe if we all work together, we can all lead this, take turns doing what we're good at, etc... It's going to take a whole village to get rid of the paralysis idiot.



    The only disadvantage to Facebook is that not everybody wants to be on it or even knows about it or how to use it - primarily I think it is used by the younger generations.
    A separate site only requires that someone has internet access, without the need to join the facebook network as well.



    A great advantage of a global list of signatures like this is that the total number (not the names) can be used in advocacy for cure research by anyone anywhere.
    This is where more than one list/way will help us. Still, I can see that this will still be segmented, but more diverse, in using all avenues possible; but not near as much so as we already are. Hopefully one will be enough to do the job.



    Great input everyone. Thanks for supporting it thus far.

  7. #17
    Quote Originally Posted by T12er View Post
    it makes me wonder why there has not even been a cure for any disease since polio in the 1950's.
    There is a good reason for this. The pharmacitucal industry would be terminally ill instead of the patient due to not selling pills for diseases that no longer exist.

  8. #18
    Maybe a symbol of someone in a wheelchair reaching up to pick fruit off a tree. Except they can't reach it. Need a good slogan for this. Any ideas.

    Maybe, good health should be accessable to everyone. Signatures needed for the Freedom from Paralysis Project.

  9. #19
    Malibu
    I thought about it more overnight and began to think that the more formal petition that Jesse's Mom suggested might be the best way to go.
    I administer a spinal cord injury network ( www.stepnow.org ) and looking at the mailing list which spans over 40 countries I'm imagining that only a fraction of them would already be on Facebook or interested in going onto it. So a petition link would work best for people like them.

    But you're right - Facebook could be used in addition to that, either by using its members to spread the petition link, or by setting up an additional 'cause' page.

    I think your original idea of calling it something like 'Signatures for Spinal Cord Research' is a good one - it says it all in one short phrase - and more can be written in the accompanying explanation.
    Freedom from Paralysis Project is catchy, but I wonder if it isn't specific enough. What we want to show is that more funding and more support for spinal cord cure research is needed by governments and public alike.

  10. #20
    Senior Member Leo's Avatar
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    i agree carbar,

    again i think we need to aim this at more than obama, ie HHS, NIH

    the new directors of those agencies and others

    Quote Originally Posted by carbar View Post
    Malibu
    I thought about it more overnight and began to think that the more formal petition that Jesse's Mom suggested might be the best way to go.
    I administer a spinal cord injury network ( www.stepnow.org ) and looking at the mailing list which spans over 40 countries I'm imagining that only a fraction of them would already be on Facebook or interested in going onto it. So a petition link would work best for people like them.

    But you're right - Facebook could be used in addition to that, either by using its members to spread the petition link, or by setting up an additional 'cause' page.

    I think your original idea of calling it something like 'Signatures for Spinal Cord Research' is a good one - it says it all in one short phrase - and more can be written in the accompanying explanation.
    Freedom from Paralysis Project is catchy, but I wonder if it isn't specific enough. What we want to show is that more funding and more support for spinal cord cure research is needed by governments and public alike.
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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