Announcement

Collapse
No announcement yet.

1,000,000 signatures for spinal cord injury

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

    It's a good start - good work carbar, I was thinking of the old handicap sign with a big red "not Aloud" line across?
    (or maybe it's easily misunderstood.. hmmm)
    Last edited by topperf; 8 Dec 2008, 2:30 PM. Reason: second thoughts
    "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


      Like:

      hcap.jpg

      images.jpg

      Minus the ghost
      "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


        petition

        Carbar, I like what you came up with for the petition overview and letter. It's not too wordy and sounds good to me.

        Comment


          there is an image I saw with the wheelchair and the body in it goes from sitting to standing...any idea where it is...I can't find it...also, members don't seem to be reading or commenting on all the work you folks are doin'...I thought there would be much more support...

          Comment


            My feeling is to try to get it up and running by the end of this week. We can always make changes later. It would be good to start collecting signatures soon and spreading the word further. If we get too close to the holidays everyone will be busy with family etc, so it might not get going till a week or two into the New Year.
            The Facebook page can be set up once the petition site is on the go. I don't think it will be long before it fills up with personal stories/contributions to the cause.
            Then people can add one or both to Myspace pages or any other social networking site, or forum pages on the internet.

            Comment


              Originally posted by carbar View Post
              Ok it's a couple of hours later and I've had a bash at doing it - here is what there is so far:

              http://www.thepetitionsite.com/create-online-petition#


              hope you can see it.


              What should we put in the "sponsored by" box? Is Global Paralysis Network going to exist? Or should we have a recognized organization be sponsor. We could use Stepnow (it is global, and it is pro sci research & has some recognition, going since 2006) or we could ask Unite2FightParalysis or CareCure if they would sponsor the petition (no money involved).

              What image should we use?

              There is not a lot of scope to put in all the details without it becoming very wordy. I figure that Facebook will have all the scope to cover many stories, viewpoints and stats, links etc. The petitionsite can only do so much in revealing the details. Main thing is to have a page to sign.

              Thoughts??

              Oh, I just checked how the link opened up and there is nothing, so here is what I put:

              Petitition title: Signatures for Spinal Cord Research

              Sponsored by: left open

              Petition overview:

              2.5 million people worldwide are victims of a spinal cord injury, with well over 130,000 new cases added every year. That's nearly 400 daily who are sentenced to a life of paralysis and all its complications. Without the use of limbs, control of organs, in some cases the ability to breath, but with the addition of pain, spasticity and the threat of infection, life becomes a battle for survival.
              Recent progress in research has proven that it is now possible to regenerate the injured spinal cord. For those that are paralyzed there is little comfort in this fantastic discovery if it cannot be translated from animal studies to patients. The science is there and what we need from our Governments and health legislators is to ensure that the funding is in place to take this remarkable research from being a result in the lab to being a cure in the clinic.

              Sign our petition to urge your President, your Government leaders and their respective health legislators to fund spinal cord research and make paralysis a curable condition. Just think of those 2.5 million and the 130,000 in each year to come who will be able to thank you for making this happen. (Go to our Facebook page for some our stories and more on this petition: )


              Petition Letter:

              To: Government leaders and health legislators worldwide

              There is something that everyone can do today to stop the devastation caused by spinal cord injury. Prominent researchers have proven that a damaged spinal cord can now be regenerated. A cure for paralysis is imminent. Investment in continuing this research and taking it to clinical trials will result in reversing paralysis in those millions already injured, and save those in the future from ever having to suffer such a fate.

              This vital work of getting the research from lab to clinic will also benefit those suffering from many other neurogenerative conditions as well as those with diabetes, cancer, multiple sclerosis.....the list is long.
              Each of us lives an illness or accident away from disability. You, the government, have it in your power to change that.

              We, the undersigned, come together urging you to ensure that funding is in place to take valuable research from success in the lab to a cure in the clinic. Millions will be thankful that you did.


              The Petition Signers



              Petition Promo title : Sign for spinal cord research
              Promo text: Help to make paralysis a curable condition. Millions will be thankful that you did.
              I will keep it shorter, I think it should take less than one minute for a person to understand and sign. I would put just links to informative web sites for whom want to understand more.
              In God we trust; all others bring data. - Edwards Deming

              Comment


                Paolo,
                you mean make this text shorter?:

                Petition overview:

                2.5 million people worldwide are victims of a spinal cord injury, with well over 130,000 new cases added every year. That's nearly 400 daily who are sentenced to a life of paralysis and all its complications. Without the use of limbs, control of organs, in some cases the ability to breath, but with the addition of pain, spasticity and the threat of infection, life becomes a battle for survival.
                Recent progress in research has proven that it is now possible to regenerate the injured spinal cord. For those that are paralyzed there is little comfort in this fantastic discovery if it cannot be translated from animal studies to patients. The science is there and what we need from our Governments and health legislators is to ensure that the funding is in place to take this remarkable research from being a result in the lab to being a cure in the clinic.

                Sign our petition to urge your President, your Government leaders and their respective health legislators to fund spinal cord research and make paralysis a curable condition. Just think of those 2.5 million and the 130,000 in each year to come who will be able to thank you for making this happen. (Go to our Facebook page for some our stories and more on this petition: )



                I'll edit it down in the morning and post an alternative for you to see.

                Comment


                  Carbar, What is the estimated total cost because of spinal cord injury? I know that's not really know but 2.5 million times, but say $50,000 a year. This number stated first may get a lot of attention.

                  100 billion worldwide each year. Just a thought. Maybe this figure could go any where in the text also.

                  ` Signatures for Spinal Cord Research

                  Comment


                    The length is good, the words are good, we're almost there, - we just need a Headline (simple and effective) and some "sub" Headlines (emotional and factual) and then the "body" (explanatory - what we got now) and we're good to go?

                    "100 billion worldwide each year. Just a thought. Maybe this figure could go any where in the text also"

                    Yes, some short easily understood numbers - factual!! Let's hit 'em with a piece of our reality - many don't survive the first blow - many don't survive the consequences of sci - us that do are in pain and pissing - shitting ourselves without sexual function and no ability to clean ourselves... Let's get the facts on the table - otherwise they won't get it - I didn't get it before I got here, and I'm only close to being a half wit.. see.. Seriously - We need to make AB's understand, and they will help us.
                    Last edited by topperf; 8 Dec 2008, 7:35 PM.
                    "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


                      How about this?



                      HELP US MOVE THIS MOUNTAIN


                      2.5 million people worldwide are victims of a spinal cord injury, with well over 130,000 new cases added every year.
                      Loss of the use of limbs, control of bowel/bladder, lack of sexual function, the inability to breathe plus untreatable neuropathic pain, spasticity and the threat of infection, make life a battle for survival. Not just a medical battle, but a financial battle too with a lifetime estimate between $438,000 - $1,350,000 per individual depending on level of injury.

                      Science is ready to move this mountain, we need to make sure that it can.

                      Sign our petition to urge your President, your Government leaders and their respective health legislators to fund spinal cord research and make paralysis a curable condition.

                      (Go to our Facebook page for some our stories and more on this petition: )





                      And thinking about the image, is anyone willing to have their photograph used? A picture of an individual will speak much louder than a graphic slogan.
                      Last edited by carbar; 9 Dec 2008, 7:15 AM.

                      Comment


                        "Recent progress in research has proven that it is now possible to regenerate the injured spinal cord. For those that are paralyzed there is little comfort in this fantastic discovery if it cannot be translated from animal studies to patients. The science is there and what we need from our Governments and health legislators is to ensure that the funding is in place to take this remarkable research from being a result in the lab to being a cure in the clinic"

                        I think you might be removing the most important paragraph. People need to know this info. Try shortening it down a bit rather than removing it.

                        Maybe something like:

                        Progress in research has proven it is possible to regenerate the injured spinal cord. The science is there and we need our Government and health legislators to ensure funding is in place to take this research from results in a lab to a cure in the clinic.

                        Comment


                          That's really good.


                          HELP US MOVE THIS MOUNTAIN


                          2.5 million people worldwide are victims of a spinal cord injury, with well over 130,000 new cases added every year.
                          Loss of the use of limbs, control of bowel/bladder, lack of sexual function, the inability to breathe plus untreatable neuropathic pain, spasticity and the threat of infection, make life a battle for survival. Not just a medical battle, but a financial battle too with a lifetime estimate between $438,000 - $1,350,000 per individual depending on level of injury.

                          Science is ready to move this mountain, we need to make sure that it can.

                          Sign our petition to urge your President, your Government leaders and their respective health legislators to fund spinal cord research and make paralysis a curable condition.

                          (Go to our Facebook page for some our stories and more on this petition: )


                          Just an idea here. Creating a bigger sense of urgency and why. The why is lack of funds. You built the urgency in describing how it affects us and that is real good. You may have a better choice of words for my editing. Again, Just wanted to show you another option of concepts to add. Feel free to use any of this or none. It's ok any way you write it in my opinion.


                          Science is ready to move this mountain of paralysis but lacks sufficient funding. We need to make sure that it will be done as soon as possible.

                          Sign our petition to urge your President, your Government leaders and their respective health legislators to fund spinal cord research, making it a thing of the past for those suffering.


                          Note: That's a brilliant title. I really like that.

                          Last edited by Malibu; 9 Dec 2008, 9:21 AM.

                          ` Signatures for Spinal Cord Research

                          Comment


                            And thinking about the image, is anyone willing to have their photograph used? A picture of an individual will speak much louder than a graphic slogan.
                            Maybe an image of someone in a wheelchair with a mountain as the background would convey paralysis to the public. Or maybe just a pix of a mountain. We don't want folks getting mad at us though, removing Mt Ararat or the Alps that is, even though paralysis research moving forward may seem this much trouble.
                            Last edited by Malibu; 9 Dec 2008, 10:06 AM.

                            ` Signatures for Spinal Cord Research

                            Comment


                              Great thread! I haven't read all of it but I've read enough of it and similar discussions to say that people don't care about others suffering so much as they care about their own suffering. That said, I think this is what they need to understand:
                              Originally posted by Malibu View Post
                              Carbar, What is the estimated total cost because of spinal cord injury? I know that's not really know but 2.5 million times, but say $50,000 a year. This number stated first may get a lot of attention.

                              100 billion worldwide each year. Just a thought. Maybe this figure could go any where in the text also.
                              My 2ยข, will participate, thanks.
                              get busy living or get busy dying

                              Comment


                                very good thread
                                Last edited by Mikki82; 9 Dec 2008, 11:07 AM.

                                Comment

                                Working...
                                X