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Thread: Palermo's hope, tourney endure

  1. #21
    Senior Member Leo's Avatar
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    Wow that is sad.

    Being a routy one i'd enjoy the shouting match and getting chased out.

    need to keep after them though


    Quote Originally Posted by Fly_Pelican_Fly View Post
    Attitudes seem to vary from country to country. I know that in the UK, you can literally hear the "tut tutting" from the Institution when you talk about a potential cure. You almost feel guilty for even thinking about it.

    We moan about the pace of science in this field - but the pace of attitude shift towards the Cure is even slower and more frustrating in the UK. If I went to my spinal unit to advocate for Cure I would probably get chased out very quickly for sending false signals to newbies. Can you believe that?

    As Paolo said, the newbies are huge resource for advocacy - but access to them is not that easy whether that be being physically restricted access to them or through the pressure of Institutional attitudes.
    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."

  2. #22
    Hi Imhopeful,

    I noticed that U2FP is credited for getting the CDRPA Bill passed. Is U2FP involved in the effort to get titles I&II funded or is that being handled by the CRF? No new info. has been posted since 3/09. Any info. on its current status?

    TIA.

  3. #23
    U2FP did mobilize the community to advocate for the passage of the CDRPA. We dedicated a portion of our time to advocating for its passage during our Washington, DC W2W events and activated our network of advocates through our action alerts. The Christopher and Dana Reeve Foundation was also credited with the passage of this bill; maybe you could reach out to Rob Gerth and ask how their plans to secure funding have taken shape.

    After W2W 2008, U2FP headed in a slightly different direction, electing to take W2W "on the road" in an effort to reach more members of the community who could not travel to Washington.

    As of this date U2FP has not been involved in a funding effort. We recognize this need as unfinished business and are eager to support any such effort. The U2FP Board plans to revisit the subject after Working 2 Walk Phoenix. However, our volunteer organization is currently working hard on W2W in Phoenix, in an effort to engage new advocates.

    We're really looking forward to meeting advocates in November. We will be discussing the various ways people can advocate. If you have an interest in being a part of advancing paralysis research, we'd like to help you get started.

    As I've mentioned before, a number of researchers whose work is discussed on this site, will be joining us. If you would like to learn more about their research, W2W offers the best opportunity to do so. Please visit the Working 2 Walk web page to learn more about it. It's going to be amazing!
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  4. #24
    Quote Originally Posted by IMHopeful View Post
    U2FP did mobilize the community to advocate for the passage of the CDRPA. We dedicated a portion of our time to advocating for its passage during our Washington, DC W2W events and activated our network of advocates through our action alerts. The Christopher and Dana Reeve Foundation was also credited with the passage of this bill; maybe you could reach out to Rob Gerth and ask how their plans to secure funding have taken shape.

    After W2W 2008, U2FP headed in a slightly different direction, electing to take W2W "on the road" in an effort to reach more members of the community who could not travel to Washington.

    As of this date U2FP has not been involved in a funding effort. We recognize this need as unfinished business and are eager to support any such effort. The U2FP Board plans to revisit the subject after Working 2 Walk Phoenix. However, our volunteer organization is currently working hard on W2W in Phoenix, in an effort to engage new advocates.

    We're really looking forward to meeting advocates in November. We will be discussing the various ways people can advocate. If you have an interest in being a part of advancing paralysis research, we'd like to help you get started.

    As I've mentioned before, a number of researchers whose work is discussed on this site, will be joining us. If you would like to learn more about their research, W2W offers the best opportunity to do so. Please visit the Working 2 Walk web page to learn more about it. It's going to be amazing!
    I've been asking that question for awhile and this is the first response I've gotten. Thank you!
    Last edited by antiquity; 08-12-2010 at 08:56 PM.

  5. #25
    Quote Originally Posted by IMHopeful View Post

    U2FP did mobilize the community to advocate for the passage of the CDRPA.............
    .........maybe you could reach out to Rob Gerth and ask how their plans to secure funding have taken shape.
    That sounds like - after we have been working hard for the passage of the CDRPA we don't care about if it has been implemented or not -

    C'mon IMHopeful you can't be serious with that answer!

    I immagine there are "problems" with the CDRF that you can't talk about here or some other problems....
    In God we trust; all others bring data. - Edwards Deming

  6. #26
    Quote Originally Posted by paolocipolla View Post
    That sounds like - after we have been working hard for the passage of the CDRPA we don't care about if it has been implemented or not -

    C'mon IMHopeful you can't be serious with that answer!

    I immagine there are "problems" with the CDRF that you can't talk about here or some other problems....
    We recognize this need as unfinished business and are eager to support any such effort. The U2FP Board plans to revisit the subject after Working 2 Walk Phoenix. However, our volunteer organization is currently working hard on W2W in Phoenix, in an effort to engage new advocates.

    I'm serious with that answer.
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  7. #27
    Quote Originally Posted by IMHopeful View Post
    We recognize this need as unfinished business and are eager to support any such effort. The U2FP Board plans to revisit the subject after Working 2 Walk Phoenix. However, our volunteer organization is currently working hard on W2W in Phoenix, in an effort to engage new advocates.

    I'm serious with that answer.
    That's good!!
    Hope you don't mind if I try to be the davil advocate.
    BTW I like the way you take my provocative behaviour :-))
    In God we trust; all others bring data. - Edwards Deming

  8. #28
    Quote Originally Posted by paolocipolla View Post
    That's good!!
    Hope you don't mind if I try to be the davil advocate.
    BTW I like the way you take my provocative behaviour :-))

    Not quite the type of advocacy that was hoping for Paolo! I'd be happy to help redirect your "provocative behavoir" to some meaningful advocacy efforts!

    I know you're advocating in Europe and would really enjoy seeing you at W2W. We have so much information that we would like for you to share with the European community. This is a global effort and we all need to work together. We're all working towards the same goal, so let's support each other.

    There is nothing more I would rather see, than you and my son back in the cockpit flying around in the clouds. It's what keeps me going, regardless of the "provocative behavior" that comes my way.

    Spero di vederti presto. Ciao!
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  9. #29
    Quote Originally Posted by IMHopeful View Post
    Not quite the type of advocacy that was hoping for Paolo! I'd be happy to help redirect your "provocative behavoir" to some meaningful advocacy efforts!

    I know you're advocating in Europe and would really enjoy seeing you at W2W. We have so much information that we would like for you to share with the European community. This is a global effort and we all need to work together. We're all working towards the same goal, so let's support each other.

    There is nothing more I would rather see, than you and my son back in the cockpit flying around in the clouds. It's what keeps me going, regardless of the "provocative behavior" that comes my way.

    Spero di vederti presto. Ciao!
    Ok, we are friends! :-))

    Actually I wasn't sure we were friends on FB but now I am sure ;-)
    In God we trust; all others bring data. - Edwards Deming

  10. #30
    Quote Originally Posted by paolocipolla View Post
    Cheese, I understand that probably I sounded a bit radical, but I didn't mean it in the way you got it.
    Still you know that there are too few people with SCI supporting research & we need to work on that somehow..
    Paolo: Sometimes things get a bit lost in the language. I work hard to get newly injured to understand research early on and to follow and hopefully fund it as well.

    You are not as radical as you might think. I just feel that there is a value is moving on with life as soon as possible. If you earn an income you can fund research.
    Every day I wake up is a good one

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