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    #16
    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.
    Last edited by antiquity; 10 Aug 2010, 1:00 AM.

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      #17
      Originally posted by cheesecake View Post
      Supporting research can't go hand in hand with wheelchair sports? I am sorry but I disagree. I live a full life, participate in sports at the 14 yr mark (wish I started sooner), advocate and raise funds for research.

      Living life and supporting research are not mutually exclusive.
      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..
      Last edited by paolocipolla; 10 Aug 2010, 5:58 AM.
      In God we trust; all others bring data. - Edwards Deming

      Comment


        #18
        Originally posted by 0xSquidy View Post
        I don't think he meant that. I'm a strong research supporter and i live a full life too.

        What i think he said is that most of the people struggles so hard with being happy again that within time they just forget about they had, they "bury" what they were and they do that because they can't find any other way to be more or less happy.

        Most people who is recently injured only want to know about reverting their condition because their brain is still on the AB world. But if time passes and they get into sports or socialize with more people injured (and i'm not saying that is not good) and whatnot, their vision of themselves as an AB person will vanish. They will be weak and won't know what to think about cures and will get to talk to veterans who, sadly, most of them are like "ParaDude" and people like this who will laugh at them for thinking on cures because they too forgot what it was to be an AB and didn't find themselves strong enough to hold the two sides of it (being happy as an injured person but keep the fight alive to recover their AB lives)... so they are probably gonna be brainwashed.
        It seems reasonable to me.
        I agree..
        In God we trust; all others bring data. - Edwards Deming

        Comment


          #19
          Originally posted by IMHopeful View Post
          List of accomplishments to date for U2FP That is an overview of our accomplishments. We have had an opportunity to connect members of this community in numerous ways, which has resulted in helping many individuals. The more people we connect with, the larger the impact.

          I don't think because someone becomes involved in activities after the acute phase, whether it's sports, school, rehab, work, etc., they are less likely to take part in advocacy activities. Clearly, you can do all of those things and advocate too.

          The first couple years after my son was injured, it was all we could do to keep up with the multiple surgeries and rehab therapies he needed. Although research was certainly on our radar, we simply didn't have the time or energy to devote to it. I think many people in the acute phase have a similar experience. Five years ago when he was injured, everyone was talking about Dr. Lima. So yes, I think there is interest in the research at the acute phase, but not sure how many people are prepared at that point to advocate.

          I've met a number of people who have had an opportunity to participate in some heavy duty advocating within a year of their injury. I think everyone's circumstances are different. I do know, it's never too late to start advocating.

          I think it would be great if rehab facilities with research labs on campus, provided an opportunity for patients to visit the labs or have a scientist visit the rehab facility and explain a little about the current status of research. I've always thought it would helpful if rehab centers added a class about SCI research and advocacy. Maybe we should send a note or call rehab facilities and explain the value in having the opportunity to learn more about research and advocacy.

          We do ask attendees for their input before they leave W2W. We also follow up with a handful of attendees to get some feedback months after they have attended W2W. We are open to suggestions and work each year to improve what we do.

          The work of U2FP is a grassroots effort that started with a rally in Washington, DC. The individuals on the U2FP team, dedicate countless hours, year after year reaching out to people in an effort to educate the community about new research and rehab therapies and provide them with the tools to advocate. From the feedback we get, it is apparent the community appreciates the opportunity W2W provides and it has led to a better understanding of research and rehab therapies. We have also heard from attendees who as a result of attending W2W, have chosen to advocate. I'll speak for the U2FP team here and say we believe we're making a difference.
          All you say makes sense to me.
          I am just trying to find a way to make more impact, probably we are just missing the great leadership of Chriss Reeve.
          In God we trust; all others bring data. - Edwards Deming

          Comment


            #20
            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.

            Comment


              #21
              Wow that is sad.

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

              need to keep after them though


              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."

              Comment


                #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.

                Comment


                  #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

                  Comment


                    #24
                    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; 12 Aug 2010, 8:56 PM.

                    Comment


                      #25
                      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

                      Comment


                        #26
                        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

                        Comment


                          #27
                          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

                          Comment


                            #28
                            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

                            Comment


                              #29
                              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

                              Comment


                                #30
                                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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