Announcement

Collapse
No announcement yet.

What is being done by us to achieve a cure?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #76
    kenf,
    You are right, there are many who may not care but we need to make them care and to support the ones that do. No one likes to be watched. It makes them uncomfortable. Wouldn't you like to make someone who doesn't care uncomfortable?

    Comment


      #77
      I suggest that the leaders of this thread get together via PM and decide exactly what they want to accomplish and want the others do and then put all the necessary information in one post or maybe even as the first post in a new thread with another good title, still keeping this thread open to develop additional ideas and support. I think the leaders should ask others to specifically commit to help. Maybe the price of admission to the group should be that the participants must have participated in DollarADay. As mentioned in other posts in this thread, a basic mission should be to develop a substantial constituency and find a way to prove that you have it. You can't have influence without a proven constituency.
      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


        #78
        Bostondad, have you contacted the Reeve Foundation? It might be a good idea for you and others to make meaningful contacts and let them know what we want (avenues to a cure and what they are exactly up to). The bottom line is to get those who are supposed to be vying for a cure to stick to their advertisements and make progress, if any progress is occuring, available to the public. Our job is to follow the projects, evaluate, and to question the forward direction of the project. By the way, what do you know of the Miami Project?

        Thanks'
        T.J.

        Comment


          #79
          Oxsquid- After thinking about the group process, I decided to remove my name from the group spreadsheet. In my experience I've noticed that if a group forms too early many people will feel excluded from joining a group. All of a sudden it becomes an in group versus outgroup. I've been around long enough to feel like an 'outsider' and I would want anyone else to feel excluded from any process by forming any group to early.

          If we take care of the present moment, we take care of the future. Little by little I will add to the database and if everyone does it maybe in a few weeks we can have something substantial to talk about.

          Comment


            #80
            Originally posted by bostondad View Post
            Please keep working on organizing us in today’s world but remember there are an awful of old school folks here like me that will need to be brought up to speed. Be patient.
            I can't organize if you guys don't give me your hand. If we're all aware that we need to do some things before start working, then we're in the good track. But that's what i am afraid of...people starting to give its thoughs and ideas, and no way to track them and assure its execution.
            I've been working in some projects with human resources and nothing is done untill everybody knows where he/she is at and have a group awareness
            Originally posted by bostondad View Post
            Imagine a list of over, say three hundred organizations/foundations signing on to a "Cure Today" pledge to be presented to Congress and the President. Imagine these foundations getting your news letter about who is ready to go to clinical trial and urging them to be supported.
            I'm totally up to that, and even more than that. We'll achieve that and more.

            Originally posted by bostondad View Post
            We need to keep discussing this novel approach to driving the cause and to create a buzz here on CC. I have seen and been part of great ideas here on CC the have crashed and burned quickly.
            That is what i am afraid of. Great ideas are not enough, great management is crucial. This will fail too if we keep trying to work things out the way we are doing right now.

            Originally posted by swh2007 View Post
            I suggest that the leaders of this thread get together via PM and decide exactly what they want to accomplish and want the others do and then put all the necessary information in one post or maybe even as the first post in a new thread with another good title, still keeping this thread open to develop additional ideas and support. I think the leaders should ask others to specifically commit to help. Maybe the price of admission to the group should be that the participants must have participated in DollarADay. As mentioned in other posts in this thread, a basic mission should be to develop a substantial constituency and find a way to prove that you have it. You can't have influence without a proven constituency.
            I'm trying to contact some of you guys. A forum is definately NOT a way to make this happen. We have to communicate through other media and will keep CareCure updated of every action we take and open for discussions.

            Originally posted by Chaz19 View Post
            Oxsquid- After thinking about the group process, I decided to remove my name from the group spreadsheet. In my experience I've noticed that if a group forms too early many people will feel excluded from joining a group. All of a sudden it becomes an in group versus outgroup. I've been around long enough to feel like an 'outsider' and I would want anyone else to feel excluded from any process by forming any group to early.

            If we take care of the present moment, we take care of the future. Little by little I will add to the database and if everyone does it maybe in a few weeks we can have something substantial to talk about.
            Okay, i'll put that on hold, i think you are right.

            For all the people who is not getting involved yet (this thread has 2800 non-unique views)...
            Think about what you can do and what you are actually doing. We can speed things up more than you can imagine.
            Everytime somebody writes in this thread is giving great information and brilliant ideas, don't keep yours spinning in your head. Take the chance, get involved.
            Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

            Fenexy: Proyecto Volver a Caminar

            http://www.fenexy.org (soon in english too)

            Comment


              #81
              Originally posted by 0xSquidy View Post
              I'm trying to contact some of you guys. A forum is definately NOT a way to make this happen. We have to communicate through other media and will keep CareCure updated of every action we take and open for discussions.
              as offered in PM, you're welcome to use the CureAdvocacy Google group for this, which is effectively a private listserv on steroids: http://groups.google.com/group/cureadvocacy -- it's not being used these days.

              Let me know & I'll get you permissions to run with it.

              Comment


                #82
                There is money out there. I added some more .org to ss today. The link below has some duplicates, however there is financial information available. If we can 'unite' there looks like there is enough money to at least get a few trials going.

                http://www.implu.com/search/for_spinal

                Comment


                  #83
                  Originally posted by Fly_Pelican_Fly View Post
                  Leo I agree with you 100%.

                  The fact that shocks me is that such good work and advocacy is being peformed yet the rallying is done by such a small number. Where is the snowball effect? Take a look at the petition on the StepNow site - only 7000 or so signatures. That is a paltry number. Why so few?
                  Lack of knowledge maybe? I had never heard about it...When I went to sign it looks like it is not an active site, forum was shut down and was supposed to be back up in May of 2009. I signed

                  Comment


                    #84
                    Great efforts here I see - go!

                    Comment


                      #85
                      Originally posted by 0xSquidy View Post

                      For all the people who is not getting involved yet (this thread has 2800 non-unique views)...
                      Think about what you can do and what you are actually doing. We can speed things up more than you can imagine.
                      Everytime somebody writes in this thread is giving great information and brilliant ideas, don't keep yours spinning in your head. Take the chance, get involved.
                      Squidy,

                      I don't have much time in these days, you & the others just go on, I'll try to contribute more soon.
                      In God we trust; all others bring data. - Edwards Deming

                      Comment


                        #86
                        Originally posted by Scott Pruett View Post
                        as offered in PM, you're welcome to use the CureAdvocacy Google group for this, which is effectively a private listserv on steroids: http://groups.google.com/group/cureadvocacy -- it's not being used these days.

                        Let me know & I'll get you permissions to run with it.
                        Thank you Scott. I definately wanted to use some kind of newsletter, i just wanna be sure it's easy and accessible to anyone. I don't remember if people must have a gmail account in order to use it?

                        Originally posted by paolocipolla View Post
                        Squidy,

                        I don't have much time in these days, you & the others just go on, I'll try to contribute more soon.
                        Hi Paolo. Your help is totally welcome and needed here, i hope you have some free time so we can talk.

                        Thank you.


                        On one hand i'm happy the people that is getting involved is doing a great commitment. On the other hand i can count them with a few fingers... What can we do to get more people involved? I was thinking maybe looking for volunteers in other forums or directly in those associations?
                        Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

                        Fenexy: Proyecto Volver a Caminar

                        http://www.fenexy.org (soon in english too)

                        Comment


                          #87
                          Originally posted by 0xSquidy View Post
                          Thank you Scott. I definately wanted to use some kind of newsletter, i just wanna be sure it's easy and accessible to anyone. I don't remember if people must have a gmail account in order to use it?
                          It's not necessary. The group would simply act as a listserv for non-Google accounts.

                          read: http://groups.google.com/support/bin...n&answer=46438

                          Join or PM me your email address & you can tinker w/ it.

                          Comment


                            #88
                            Originally posted by Scott Pruett View Post
                            It's not necessary. The group would simply act as a listserv for non-Google accounts.

                            read: http://groups.google.com/support/bin...n&answer=46438

                            Join or PM me your email address & you can tinker w/ it.
                            Scott buddy, above you said that cure work is come se come sa and now you are full in? Thath you now have changed youre mind and now work 100 % on this, is Great! Was it the cure or the fancy stuff that did it? Anyhow, how many man hrs a week will you give this good cure effort?
                            Last edited by Leif; 24 Feb 2010, 11:34 PM.

                            Comment


                              #89
                              Originally posted by Leif View Post
                              Scott buddy, above you said that cure work is come se come sa and now you are full in? Thath you now have changed youre mind and now work 100 % on this, is Great! Was it the cure or the fancy stuff that did it? Anyhow, how many man hrs a week will you give this good cure effort?
                              I'm full time in grad school. I don't have anywhere near 100% for this, but keep up with email for all sorts of stuff. The group linked above was created a while ago, never took off. I haven't touched it for a long while.

                              That said, anyone can create a different google group... or a google site... etc.

                              This just came to mind after reading this thread.

                              Comment


                                #90
                                Hrs/week? Number.

                                Comment

                                Working...
                                X