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    About picking a date for a DC event...besides consulting the Legislative calendar and giving much consideration to the weather, remember that legislators are basically only there Tues, Wed, and Thurs. Lobbying = a bit pointless on Mondays and Fridays.

    Just thought I'd post that before I forget.
    Blog:
    Does This Wheelchair Make My Ass Look Fat?

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      Originally posted by betheny View Post
      Oh, I never lost the fire. Just the strength! It is hugely frustrating to know what you want and need to do, and be too feeble. Of course I'm preaching to the choir on that front, here at CareCure!
      Sorry to mis-characterize it. Yes, it sucks. But we all have something left to give, even if it is just a mind-set, don't we?
      2012 SCINetUSA 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.

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        Well, it's nice to think so. This knowledge I acquired during that period has seemed kind of useless but I think it could be very valuable if some whippersnappers wanted to take it and run with it.

        What are you visualizing w/ your virtual rally?
        Blog:
        Does This Wheelchair Make My Ass Look Fat?

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          Originally posted by betheny View Post
          Well, it's nice to think so. This knowledge I acquired during that period has seemed kind of useless but I think it could be very valuable if some whippersnappers wanted to take it and run with it.

          What are you visualizing w/ your virtual rally?
          Oh, you have a lot to give. I'm not sure how to do a virtual rally Maybe a poll? Seems like we need to do some more talking and test the waters a little more. All I know is we can't expect anyone else to care if we don't care.

          We need some more people to jump in here!!! A few people posting to each other isn't enough.
          2012 SCINetUSA 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.

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            You should fill out your profile so folks can know a little about you swh. Sometimes people are leery when not knowing anything about a person, and thus are hesitant to speak their minds. I too would like to see more people join in with their voices and views on how to organize the CC community so that the greatest impact is achieved.
            Originally posted by swh2007 View Post
            Oh, you have a lot to give. I'm not sure how to do a virtual rally Maybe a poll? Seems like we need to do some more talking and test the waters a little more. All I know is we can't expect anyone else to care if we don't care.

            We need some more people to jump in here!!! A few people posting to each other isn't enough.
            Please donate a dollar a day at http://justadollarplease.org.
            Copy and paste this message to the bottom of your signature.

            Thanks!

            Comment


              Originally posted by betheny View Post
              Any ideas on how to best utilize all these Europeans?
              Maybe next year (2011) one should aim for two simultaneous rallies, -one in USA, in Washington D.C. which the Americans could organize, and one in Europe, in Brussels which the Europeans could organize. One website for both, for programs and announcement which also could include streaming for Web-Tv and other stuff. Made by spinal cord injured for spinal cord injured.

              Comment


                Originally posted by Leif View Post
                Maybe next year (2011) one should aim for two simultaneous rallies, -one in USA, in Washington D.C. which the Americans could organize, and one in Europe, in Brussels which the Europeans could organize. One website for both, for programs and announcement which also could include streaming for Web-Tv and other stuff. Made by spinal cord injured for spinal cord injured.
                An idea to be considered definitly. Still we are far behind here in Europe & need to line up many things.
                In a few weeks I may have a better picture on the feasibility of that.
                In God we trust; all others bring data. - Edwards Deming

                Comment


                  Originally posted by rdf View Post
                  You should fill out your profile so folks can know a little about you swh. Sometimes people are leery when not knowing anything about a person, and thus are hesitant to speak their minds. I too would like to see more people join in with their voices and views on how to organize the CC community so that the greatest impact is achieved.
                  I thought it was filled out. Anyway, I am a c 3/4 walking quad (I guess that's what I am) as a result of being rear-ended by a garbage truck three years ago. I started out paralyzed from the neck down and thru a solid year and 1/2 of hard work, a great surgeon, a great re-hab doctor, and probably mostly blind luck I am back on my feet, sort of, but I still have many SCI related problems and will not, as Dr. Young seems to think is common, ever forget that I had (have) a SCI. I think he's wrong there.

                  I'm about to turn 58. I was a commercial real estate lawyer in Florida for many years before I was hurt and for as long afterwards as I could do it or at least part of it. No, I didn't cause the collapse of the world real estate market or get rich off of it. I don't expect anything out of this for myself. I don't want to be your leader. I don't expect anyone's respect because I know you don't get that here on CC for a long time. I just don't have that much time to play around. I definately am not good at science or understanding a lot of the technical aspects of cure science. Frankly, a hard concussion, the pain meds, and pure laziness and lack of apptitude assure that I am never going to understand the science. But I don't think I need to understand it to contribute.

                  I just wonder if some of the CC members want to try to do something for a cure effort. I would like to do something but after 5 months of watching and making an occasional post, I thought I would try to find out what others thought or whether I should just move onto another place. As I said, I don't have a lot of time nor the natural inclination to play around. It's hard for me to understand the true heartbeat of CC. So I thought I would ask and keep asking and asking until I could see a glimpse of it.

                  I work for a cure of another chronic disease/health condition that affects my family and know that I am just a foot soldier in the war against that disease. It's hard to figure out how to be even a foot soldier in the war against SCI so I am asking some questions.

                  And yes I have also been known to be a pain in the ass, but usually only with the best of intentions.

                  I hope that's enough info because I can't think of anything else to say. Please feel free to ask questions.
                  2012 SCINetUSA 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.

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                    Originally posted by rdf View Post
                    You should fill out your profile so folks can know a little about you swh. Sometimes people are leery when not knowing anything about a person, and thus are hesitant to speak their minds. I too would like to see more people join in with their voices and views on how to organize the CC community so that the greatest impact is achieved.
                    PS: Profile Privacy Setting Changed
                    2012 SCINetUSA 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.

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                      Thanks for filling out your profile. What I have bolded in your quote is so very true. There are over 36K CC members, and one would think to gather just a small percentage together to act wouldn't be difficult. But it seems to be very difficult.

                      I'd like to hear your ideas on what can be done to raise funds and awareness, swh2007. I commend your energy and advocacy.
                      Originally posted by swh2007 View Post
                      Oh, you have a lot to give. I'm not sure how to do a virtual rally Maybe a poll? Seems like we need to do some more talking and test the waters a little more. All I know is we can't expect anyone else to care if we don't care.

                      We need some more people to jump in here!!! A few people posting to each other isn't enough.
                      Please donate a dollar a day at http://justadollarplease.org.
                      Copy and paste this message to the bottom of your signature.

                      Thanks!

                      Comment


                        Originally posted by rdf View Post
                        Thanks for filling out your profile. What I have bolded in your quote is so very true. There are over 36K CC members, and one would think to gather just a small percentage together to act wouldn't be difficult. But it seems to be very difficult.

                        I'd like to hear your ideas on what can be done to raise funds and awareness, swh2007. I commend your energy and advocacy.
                        It doesn't take too much energy to post a few questions, but thank you.

                        My basic idea (hope) is to ask the CC membership to show their heart and to come together as a group on certain basic cure concepts so that we will constitue an identifiable constituency and can act in concert on occassion. 36,000 people, or 450,000 or whatever US people who have a SCI, can move a mountain here and there. And that would give each of us a voice in our future or at least the future of other members who are younger, stronger or whatever. I may never see any improvement, but I sure would feel great satisfaction if you, or Betheny, or Lynnifer, or Keeping On or other members did. I believe that most CC members feel the same way, and I don't want to belong to CC if I am wrong.

                        If we all could somehow build a significant CC constituency, we could also partner with other SCI organizations on cure efforts and help move even bigger mountains on occassion while having a voice.

                        So, my ideas are centered on the CC membership and the SCI community. If we were able to build a significant CC constituency on certain basic concepts, the fundraising and advocacy oppurtunities will follow. Perhaps someday the CC membership also can actually have some influence in the direction of research.

                        We are all foot soldiers in the war against SCI. My idea is that the foot soldiers should find some basic common ground and learn to be an army. Somewhere around here there are a general and some other officers, and we will figure out who they are later.

                        So, I encourage the CC membership to step up and show their heart. What do you think we could accomplish and how should we do it? Surely there are more than 10 or whatever members who have ideas. If enough members respond, we will be able to identify the common ground we are looking for.

                        Thanks for listening/reading. TMI I guess.

                        Steve
                        2012 SCINetUSA 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.

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                          Steve, thanks for your insightful input. I agree that momentum is grown through a consoidated effort. What I defintely see though is that information is posted almost daily on real therpies and clinical trials. Let's in addition to fund raising focus in on REAL things happening today on potential therapies and clinical trials. I believe, that things are happeing very quickly and daily info is pointing to clinical trials that some day wiol be availbale to us all. Duran just left a post on potential therapy that mignt be avialable fro clinical trial. It's coming.

                          Comment


                            Originally posted by keeping on View Post
                            Steve, thanks for your insightful input. I agree that momentum is grown through a consoidated effort. What I defintely see though is that information is posted almost daily on real therpies and clinical trials. Let's in addition to fund raising focus in on REAL things happening today on potential therapies and clinical trials. I believe, that things are happeing very quickly and daily info is pointing to clinical trials that some day wiol be availbale to us all. Duran just left a post on potential therapy that mignt be avialable fro clinical trial. It's coming.
                            Thank you for your input. I'll put this in the summary.

                            Come on, members. What do you want and how do we get it for you?
                            2012 SCINetUSA 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.

                            Comment


                              Originally posted by rdf View Post
                              Thanks for filling out your profile. What I have bolded in your quote is so very true. There are over 36K CC members, and one would think to gather just a small percentage together to act wouldn't be difficult. But it seems to be very difficult.

                              I'd like to hear your ideas on what can be done to raise funds and awareness, swh2007. I commend your energy and advocacy.
                              When I see that 36k number, I wonder what it means. It seems like only a small handful are active. I am sure there are many lurkers out there, but who they are is a big question. I doubt that even NSCIA has a large membership. There is no way to communicate with a large portion of the SCTs out there, and even with CC members. If they tune in, fine, but there is no way to appeal to them via email or anything. Without some effective way to communicate to those who are not active or who are not CC members, we are left to struggle on our own.

                              Does anyone have any ideas regarding some kind of outreach CC might do to expand its membership and involvement?
                              You will find a guide to preserving shoulder function @
                              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                              See my personal webpage @
                              http://cccforum55.freehostia.com/

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                                I notice that this thread has had hundreds of "views" in the past 24 hours but only a few posts. Come on viewers, take a few moments to say what you want, even if it is nothing because you think this is a "tiki bar of bullshit."

                                If in the end it becomes clear that CC cannot build a basic constituency for a cure, then at least everyone will know what the deal is.
                                2012 SCINetUSA 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.

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