Announcement

Collapse
No announcement yet.

1,000,000 signatures for spinal cord injury

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

  • #16
    Malibu, it's your idea, but I'd be willing to set it up on Facebook if you like; if you are on Facebook though it is not complicated to do it - it just needs a cause name, a short text about it and outlined goals and then an email contact address so that someone can administer the page.
    Sure Carbar, setup the Facebook way if you want too. I am dunce on Facebook. Actually, we can get there several ways and should use all means possible. Myspace is used by over twice as many people as Facebook, which both totals around 70 million. But how they both interact with people on the net and what differences exist between the two web sites I wouldn't know.



    Freedom from Paralysis was one title we had going on this subject a few years ago. It's not super great; so ideas are welcome any time. A proper title should be the first practical step as you said. The harder parts will be what follows next.



    knowthill, that's cool that you would be so willing and able. I'm the same way in that it starts somewhere but not sure where I am best at. Being in a wheelchair is not what I like to consider myself best at. Maybe if we all work together, we can all lead this, take turns doing what we're good at, etc... It's going to take a whole village to get rid of the paralysis idiot.



    The only disadvantage to Facebook is that not everybody wants to be on it or even knows about it or how to use it - primarily I think it is used by the younger generations.
    A separate site only requires that someone has internet access, without the need to join the facebook network as well.



    A great advantage of a global list of signatures like this is that the total number (not the names) can be used in advocacy for cure research by anyone anywhere.
    This is where more than one list/way will help us. Still, I can see that this will still be segmented, but more diverse, in using all avenues possible; but not near as much so as we already are. Hopefully one will be enough to do the job.



    Great input everyone. Thanks for supporting it thus far.

    ` Signatures for Spinal Cord Research

    Comment


    • #17
      Originally posted by T12er View Post
      it makes me wonder why there has not even been a cure for any disease since polio in the 1950's.
      There is a good reason for this. The pharmacitucal industry would be terminally ill instead of the patient due to not selling pills for diseases that no longer exist.

      Comment


      • #18
        Maybe a symbol of someone in a wheelchair reaching up to pick fruit off a tree. Except they can't reach it. Need a good slogan for this. Any ideas.

        Maybe, good health should be accessable to everyone. Signatures needed for the Freedom from Paralysis Project.

        ` Signatures for Spinal Cord Research

        Comment


        • #19
          Malibu
          I thought about it more overnight and began to think that the more formal petition that Jesse's Mom suggested might be the best way to go.
          I administer a spinal cord injury network ( www.stepnow.org ) and looking at the mailing list which spans over 40 countries I'm imagining that only a fraction of them would already be on Facebook or interested in going onto it. So a petition link would work best for people like them.

          But you're right - Facebook could be used in addition to that, either by using its members to spread the petition link, or by setting up an additional 'cause' page.

          I think your original idea of calling it something like 'Signatures for Spinal Cord Research' is a good one - it says it all in one short phrase - and more can be written in the accompanying explanation.
          Freedom from Paralysis Project is catchy, but I wonder if it isn't specific enough. What we want to show is that more funding and more support for spinal cord cure research is needed by governments and public alike.

          Comment


          • #20
            i agree carbar,

            again i think we need to aim this at more than obama, ie HHS, NIH

            the new directors of those agencies and others

            Originally posted by carbar View Post
            Malibu
            I thought about it more overnight and began to think that the more formal petition that Jesse's Mom suggested might be the best way to go.
            I administer a spinal cord injury network ( www.stepnow.org ) and looking at the mailing list which spans over 40 countries I'm imagining that only a fraction of them would already be on Facebook or interested in going onto it. So a petition link would work best for people like them.

            But you're right - Facebook could be used in addition to that, either by using its members to spread the petition link, or by setting up an additional 'cause' page.

            I think your original idea of calling it something like 'Signatures for Spinal Cord Research' is a good one - it says it all in one short phrase - and more can be written in the accompanying explanation.
            Freedom from Paralysis Project is catchy, but I wonder if it isn't specific enough. What we want to show is that more funding and more support for spinal cord cure research is needed by governments and public alike.
            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


            • #21
              I agree Leo, once the list gathers signatures it can be used/directed in different ways to push for SCI research. It could become a very useful tool for advocacy.

              Comment


              • #22
                I've put together a draft of a text to use if we go for the formal petition :



                SIGNATURES FOR SPINAL CORD RESEARCH


                It is estimated that each year over 11,000 people in the U.S.A. (130,000 worldwide) survive a traumatic spinal cord injury, with a further estimate of a current total of 400,000 American paraplegics & quadriplegics (2.5 million worldwide). Many of these survivors are young, in their early 20’s and 30’s, now facing a lifetime of paralysis following their injury.

                A damaged spinal cord is a very complicated injury to treat, let alone to cure. Aside from the loss of use of the limbs, there is loss of bowel & bladder control, and sexual function too, even in some cases the ability to breathe unassisted is no longer there. In addition central nervous pain and spasticity reduce the quality of the daily lives of many injured even further.
                The medical, social, economic and psychological consequences of the injury are long-lasting and profound.

                Science and medicine have now proven that it is possible to survive a traumatic spinal cord injury but still regeneration of the damage cord seemed an impossibility. However, recent progress in the field of stem cell research has shown that it is in fact possible to regenerate a damaged cord. This fantastic discovery has yet to be translated into human clinical trials but the science is moving fast so it is only a matter of time. Next year the first human clinical trials using a therapy derived from embryonic stem cells will be the first of its kind to be conducted in the States.

                Given the statistics above, time can never move fast enough to produce a cure that will bring a halt to the staggering annual numbers of newly injured and the millions already paralyzed. In order to facilitate and speed up the drive for a cure, we urge you to add your signature to this petition. Together we can push our governments and legislators to provide more funds for spinal cord research. The science will only arrive at the threshold of a cure if government and public give it its full support.

                Join our ranks, become a supporter of spinal cord research.
                Add your signature today.




                I drew this up just so we have something to start working from. Any more suggestions? It would be shame to lose the momentum on this. It's a very good idea of Malibu's with great potential I believe. We've nothing to lose by starting the petition asap and seeing where it goes.

                Comment


                • #23
                  I like the write up Carbar. Great job. We're not giving up. It may take time but not that much time.



                  I checked out some petition sites and some petition scripts. I haven't seen the link in this thread yet but will very soon. The format at some of the petition sites are not as navigated as I would like. They have hundreds of causes. The scripts are probably the simple way. One script came with a template layout that had the layout I like.

                  http://petitionscript.net/phpPETITION2/index.php

                  here's one script with the included web parts. Not sure if the banner on the bottom stays or not. We might could find a better solution after searching some more.

                  http://petitionscript.net/CFpetition/default.cfm?ID=NEW
                  Last edited by Malibu; 12-02-2008, 06:11 PM.

                  ` Signatures for Spinal Cord Research

                  Comment


                  • #24
                    Indeed a very good starting point carbar - I thinking maybe we should keep the focus worldwide so:
                    It is estimated that each year over 11,000 people in the U.S.A. (130,000 worldwide) survive a traumatic..
                    Maybe becomes:
                    It is estimated that each year over 130.000 people worldwide survive a traumatic...
                    Or something like that...
                    And when it's done we need it translated into at least Spanish, Mandarin, Arab, German and French.
                    I think the forum can help and I would like to translate it into Danish
                    You like?
                    And I know it sounds harsh, but I think we should implicate that some SCI survivors choose to end their suffering themselves - this should emphasize what we're dealing with here.
                    Or am I out of line here?
                    Last edited by topperf; 12-02-2008, 06:47 PM. Reason: adding material
                    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

                    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
                    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


                    • #25
                      Carbar & Everyone, on second thought, the prebuilt ones are maybe not too bad. This one gives you your own web address, allows 1,000 words, doesn't look bad, and it's quicker. Maybe we can gather a list of these and decide which is best.

                      Thank's Jesse's Mom, I just realized you found it first.

                      http://www.ipetitions.com/start-petition/


                      here's what the link above offers. sample: http://www.ipetitions.com/start-petition/sample.html
                      Last edited by Malibu; 12-02-2008, 07:06 PM.

                      ` Signatures for Spinal Cord Research

                      Comment


                      • #26
                        I would second that you add stats on the number of deaths each year either due to suicide or other complications (sepsis, sores, etc.). Also, there are stats on the $$ spent each year to care for SCIs. Don Reed has some numbers somewhere that show that a "cure" is far cheaper than life-long care.

                        Kudos to you all for this project. WTG!

                        I hope you put it on Facebook, Myspace, etc.
                        My blog: Living Life at Butt Level

                        Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                        "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                        Dawna Markova Author of Open Mind.

                        Comment


                        • #27
                          As soon as we decide on the final text. I can take care of the Spanish translation.
                          I have been checking and seems like ipetitions followed by facebook is the way to go.

                          Comment


                          • #28
                            Carbar has done a great job with the letter. Here's one I wrote for a different project. It's more emotional than Carbar's. Feel free to use any part of it (or none). The stats are for the US....

                            This morning, 30 people woke up facing the rest of their lives with a spinal cord injury. For those 30 people who survived their injury, another 50 died within this first 24 hours.

                            Think for a second, 80 people suffered a spinal cord injury today, less than half of them lived through it. That’s 900 injuries and 1500 deaths this month alone. If any other population from our service people overseas to border-crossers was dying in these numbers, we would do everything within our power to make it stop.

                            There is something everyone can do today to stop the devastation of life with a spinal cord injury. Support the promise of stem cell research.

                            This vital work will one day cure spinal cord injuries, cancer, diabetes, Alzheimer’s and multiple sclerosis to name a only a few of the diseases currently being studied.


                            Each of us lives an illness or an accident away from disability. Please do not wait until you are affected to get involved. Visit.www.camr.org to learn more.
                            My blog: Living Life at Butt Level

                            Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                            "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                            Dawna Markova Author of Open Mind.

                            Comment


                            • #29
                              It's up and we can tweak it later as needed. Keep the communication channels open.

                              Promoting it and getting the right amount of signatures will be next. Face book and Myspace may help a lot in these areas.

                              http://www.ipetitions.com/petition/SSIR/

                              ` Signatures for Spinal Cord Research

                              Comment


                              • #30
                                It's looking good Malibu. I'll take some time later to see what possible changes/additions we could make.
                                One thing I did notice though is in the GOOGLE ADS column - there is an ad for Medra - can that be taken out? As far as I know Medra is not offering any legitimate treatments so having an ad on the same page as our petition is not appropriate. It goes against what we are trying to achieve. That goes for any other such ads that are offering stem cell treatments I think.

                                What do others think about that?


                                Also do we want to call it Signatures for Spinal Injury Research, or, Signatures for Spinal Cord Research ??

                                Comment

                                Working...
                                X