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Thread: Agenda for Washington April 12

  1. #271
    A thought about thinking big ...
    Under whatever banner we are under ... what are we asking for - what will make a difference? If we going, let's go big. Not just the passage of CRPA (which has no $$$ attached).

    How about three points ... all are how to 'cure paralysis now.'
    1. Increase SCI research funding.
    2. Pass CRPA.
    3. Establish U.S. clinical trials.

    Allows us to tell our whole story.

    Persist ... in Hope,

    Patricia

  2. #272
    Super Moderator Sue Pendleton's Avatar
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    Originally posted by BigB:

    I hope it's okay though to use our organization, this once, to pay homage. And let's not forget how much we can learn from them!
    We did that already at the Rally for the Cure.

    We need to expand our scope and unite every organization working for a cure if you want to see it in your lifetime
    OK, reality here. There is only so much many of these organizations caan do legally when it comes to political lobbying. Charitable organizations formed under the IRS rules as 501(C)3s can do very little. We need to use those organizations that can lobby to help with details. CAMR was formed for this particular reason. It united so many different groups to lobby for NIH funds, clinical trials and stem cells.

    Rally For The Cure with the wheelchair logo right there in peoples' faces is not part of any 501(C)3 that I know of--anyone? If Cure Paralysis Now is more a grassroots group can you afford the start up costs? Quest For the Cure is pretty much grassroots at the local levels. We have experience in some of the political manuverings but, again, we are as funded as we can manage on our own.

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  3. #273
    Banned Faye's Avatar
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    Just contacted the Spinal Cord Society!

    They are going to notify people from their local chapters to add to our turn-out.

    I do not want to alienate any organization from the march...it should truly be a grass-roots effort under the ADVOCACY ONLY umbrella of Cure Paralysis Now, outside of specific funding projects. The focus should be on VISIBILITY.

    BTW I have been a proud member of SCS since 1998, but other than my own donations have never done any fundraising for their chapters.

    ~ Choices Are The Hinges Of Destiny ~

  4. #274
    Originally posted by Patricia:

    A thought about thinking big ...
    Under whatever banner we are under ... what are we asking for - what will make a difference? If we going, let's go big. Not just the passage of CRPA (which has no $$$ attached).

    How about three points ... all are how to 'cure paralysis now.'
    1. Increase SCI research funding.
    2. Pass CRPA.
    3. Establish U.S. clinical trials.

    Allows us to tell our whole story.

    Persist ... in Hope,

    Patricia


    I agree with you Patricia on these 3 points. I think I read something that said SCI research accounted for about 1% of the NIH funding? Is that correct?

    [This message was edited by hope2findacure on 01-26-05 at 02:48 PM.]

  5. #275
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    I have sent a donation today. Will try to send more before the date.

    Maybe someone (I don't know how to do it) could transfer information to a new topic so that it will be easy to find for anyone else who wants to help with funds for this amazing day!!!

    Even though we can't be there, it is so exciting, and cheers to all you guys for your amazing work!!


    Shelley

  6. #276
    Originally posted by Patricia:

    A thought about thinking big ...
    Under whatever banner we are under ... what are we asking for - what will make a difference? If we going, let's go big. Not just the passage of CRPA (which has no $$$ attached).

    How about three points ... all are how to 'cure paralysis now.'
    1. Increase SCI research funding.
    2. Pass CRPA.
    3. Establish U.S. clinical trials.

    Allows us to tell our whole story.

    Persist ... in Hope,

    Patricia
    This is a good idea if we don't think it will put the legislators off of us completely. It's the kind of thing that separates us from the CRPF and makes us different. And I still think we need to say a word or two about cathing. I'm tired of the government thinking we're whining because we can't walk and here we have these dandy wheelchairs...

    My stepmom always says, if you don't ask, you don't get.

    "You need to march. You need to demand action. You need to stop feeling unempowered and do something...Freedom is your right. Until you claim your self-confidence and know your worth, no one will give it to you. It starts with you."-LetsGo

  7. #277
    Banned Faye's Avatar
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    Originally posted by shelley:

    I have sent a donation today. Will try to send more before the date.

    Maybe someone (I don't know how to do it) could transfer information to a new topic so that it will be easy to find for anyone else who wants to help with funds for this amazing day!!!

    Even though we can't be there, it is so exciting, and cheers to all you guys for your amazing work!!


    Shelley
    Shelley thank you!
    Your donation is very welcome!

    Though this is very much a grass-roots undertaking with $0, we will need to secure stage and sound equipment for our speakers.

    I'm glad you were able to join us in support and maybe next time we'll get to actually see you at the Cure Paralysis Now march on Washington to thank you personally.

    Faye

    ~ Choices Are The Hinges Of Destiny ~

  8. #278
    Faye,
    Possibly a local DJ would be happy to lend his speakers, amps and mikes, and maybe even pitch in to do a little MC work. Also could play music like ain't no stopping us now, etc They might be happy for their equipment to be there with their name and phone number. Its also midweek daytime and it would not interfare with a wedding, etc they might have booked already.

  9. #279
    Faye/BigBob - Have already posted on one of the other topics re getting sound equipment - my son knows folks in the 'biz', and can possibly help out. Once you figure out where the speaking will take place, he can contact those he knows (some only do outdoor, some indoor, etc.).

    _____________
    What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

  10. #280
    Banned Faye's Avatar
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    Originally posted by Marmalady:

    Faye/BigBob - Have already posted on one of the other topics re getting sound equipment - my son knows folks in the 'biz', and can possibly help out. Once you figure out where the speaking will take place, he can contact those he knows (some only do outdoor, some indoor, etc.).

    _____________
    What people say, what people do, and what they say they do are entirely different things. - Margaret Mead
    Marmalady, thanks! We need to collect these kinds of "resource" posts in the committee thread!
    Do you mind posting your offer there too, so we can keep track of all our volunteers/coordinators?

    ~ Choices Are The Hinges Of Destiny ~

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