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1,000,000 signatures for spinal cord injury

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    Considering there has been activity on the petition site in the last couple of weeks I have extended the petition for another year, until December 2012. It can be ended at any time we choose between now and then.

    Please continue to give the link www.endparalysis.com to others to sign. Since 2008 when the petition was started there are sadly many more paras and quads in the world. So there are always new people to reach out to.

    Comment


      In the last 24 hours there have been over 1000 new signatures for the petition. I have no way of knowing where exactly this new drive is coming from but it is mostly Stateside, so many thanks to all those who continue to push for more signatures. We are now over 10,000 signatures and although that is still far off our end target, it is nevertheless a very significant number and great to build on. With so many signatures we can start to see the petition as a valuable tool in pushing for spinal cord research. Please do not give up on making this work for us.
      Thanks.

      Comment


        Signatures of 100 million won't make a difference.......

        Originally posted by carbar View Post
        In the last 24 hours there have been over 1000 new signatures for the petition. I have no way of knowing where exactly this new drive is coming from but it is mostly Stateside, so many thanks to all those who continue to push for more signatures. We are now over 10,000 signatures and although that is still far off our end target, it is nevertheless a very significant number and great to build on. With so many signatures we can start to see the petition as a valuable tool in pushing for spinal cord research. Please do not give up on making this work for us.
        Thanks.
        I'm sorry, maybe this has already been related within the 43 + pages that make up this thread, but it is my observation as a mere ten year survivor of hi quadiplegia, and fairly well read on all things SCI, that we could work like mad to garner millions of signatures and it won't make hardly a dent on the resolve of SCI.
        What will however (and I know you think I'm about to repeat the most frequented subject when you speak of cure: $$$. I'm not but you'd be close), what will unfortunately make the difference is if (God really forbid) one or more persons of well placed status atop the word's social pyramid is stricken with this condition. Then, and only then will there be intense focus on the cure.

        Comment


          Originally posted by Tim C. View Post
          I'm sorry, maybe this has already been related within the 43 + pages that make up this thread, but it is my observation as a mere ten year survivor of hi quadiplegia, and fairly well read on all things SCI, that we could work like mad to garner millions of signatures and it won't make hardly a dent on the resolve of SCI.
          What will however (and I know you think I'm about to repeat the most frequented subject when you speak of cure: $$$. I'm not but you'd be close), what will unfortunately make the difference is if (God really forbid) one or more persons of well placed status atop the word's social pyramid is stricken with this condition. Then, and only then will there be intense focus on the cure.
          like Oprah or Bill Gates

          Comment


            Lol, are we putting together a wish list?

            Comment


              I can't help it.....I'm on the same page....need another high profile injury. Not many under the age of 25 know the name of Christopher Reeve....his accident was quite awhile ago.

              Comment


                Originally posted by carbar View Post
                In the last 24 hours there have been over 1000 new signatures for the petition. I have no way of knowing where exactly this new drive is coming from but it is mostly Stateside, so many thanks to all those who continue to push for more signatures. We are now over 10,000 signatures and although that is still far off our end target, it is nevertheless a very significant number and great to build on. With so many signatures we can start to see the petition as a valuable tool in pushing for spinal cord research. Please do not give up on making this work for us.
                Thanks.
                Today it's nearly 14,000 so the significant activity continues. Does anyone know if there is a way to find out the traffic sources that are bringing these new signers to the petition? I'm curious to know how, in the last few days, we have gained nearly 5000 signatures, more than half of the 9000 that we had reached over the last couple of years.

                Comment


                  Originally posted by Tim C. View Post
                  I'm sorry, maybe this has already been related within the 43 + pages that make up this thread, but it is my observation as a mere ten year survivor of hi quadiplegia, and fairly well read on all things SCI, that we could work like mad to garner millions of signatures and it won't make hardly a dent on the resolve of SCI.
                  What will however (and I know you think I'm about to repeat the most frequented subject when you speak of cure: $$$. I'm not but you'd be close), what will unfortunately make the difference is if (God really forbid) one or more persons of well placed status atop the word's social pyramid is stricken with this condition. Then, and only then will there be intense focus on the cure.
                  I believe that the answer baldly stated, is that SCIs and their nearest and dearest do not pose a big enough danger to the politicians, as they do not represent a big enough lobby. Cancer and AIDS are horrible, and the later catapulted to public notoriety in the 1980s. Many members of the public still think that SCI is avoidable; i.e. drive better (never mind the other fellow driving badly), don't do dangerous sports etc. 1 in 3 persons will be affected by, if not contract cancer. The size of this lobby group is huge; democratically governments can ignore it at their peril. The irony is that cancer is a direct cause of some SCIs, and many have nothing to do with physical trauma.
                  2010 SCINet 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 chris arnold View Post
                    I believe that the answer baldly stated, is that SCIs and their nearest and dearest do not pose a big enough danger to the politicians, as they do not represent a big enough lobby. Cancer and AIDS are horrible, and the later catapulted to public notoriety in the 1980s. Many members of the public still think that SCI is avoidable; i.e. drive better (never mind the other fellow driving badly), don't do dangerous sports etc. 1 in 3 persons will be affected by, if not contract cancer. The size of this lobby group is huge; democratically governments can ignore it at their peril. The irony is that cancer is a direct cause of some SCIs, and many have nothing to do with physical trauma.
                    Sorry, but I almost completely disagree with you.

                    First, some kinds of cancer are indeed horrible and nearly terminal, e.g. Pancreatic, Small Cell Lung cancer, etc. But many are quite curable. There are so many kinds. It is kind of like trying to find a cure for viruses.

                    As for AIDS, Magic Johnson is doing quite well after being diagnosed with HIV 20 years ago. Most of AIDS victims do have effective remedies while a cure is being found. I'd take that. Also, AIDS is almost completely preventable in advanced societies.

                    Regardless, I don't think it is a contest. People and governments will give to the group that requests their help the most passionately (overwhelmingly). There is enough money for AIDS, cancer, and SCI, it's just that currently SCI research isn't getting its fair share.

                    As for the average person (on the street or in congress) not caring about SCIs because they think we somehow deserved it. I'll bet you that 90% of the average US citizens have no idea what SCI is, much less what causes it.

                    There are less than 1/2 as many people in the US affected by AIDS/HIV as by SCI. AIDS advocates are simply better at getting the word out. If every family member affected by SCI wrote a letter to their congressperson requesting more funds for SCI research, you would would have millions of letters.

                    Now, picture each person making lots of photocopies of their letter and mailing one a week or month. Believe me, if congress started getting millions of letters each month, they would listen.

                    Too bad it won't happen. We SCIs had rather sit and wait for someone else to do it for us. Maybe we do deserve our plight.

                    Sorry. I lost my cool.
                    Last edited by khmorgan; 20 Feb 2012, 12:38 PM.

                    Comment


                      Kh i have to agree with you except on pancreatic cancer. there has been a lot of news lately on possible stem cell therapy for this deadly cancer. so progress is well under way. A cure yet, no, but progress. A number of my family were striken with HEART INFLAMMATION AS YOUTHS. aT THE TIME EVEN PENICILLIN wqsn't available. Other memebers has the same after penicillin adn other cyclines became avaialbel and that condition is quite treatable. Now. Polio which was prevalent wneh I was a kid, is now a word only to my children. I believe that news is accruing for stem cell therpy for a lot of conditons. ONe day it will be for you guys too.

                      anthony

                      Comment


                        We shouldn't be interested in who has the worst this or that. My father died in 1970 from lung cancer; several others of my family or in-laws have been affected, and died.

                        The real point I was trying to make is this: it's a numbers game. We are told that world wide there are 2.5millions with sci. In the UK alone, 20millions are affected, in one way or another. As both my district nurse, and the tvn who has been looking at my obdurate sacral sore, both say sci research in the UK just isn't fashionable. Talk to your GP, your spinal unit about cure: they damn well no not want to know; they glaze over and go mmm!
                        2010 SCINet 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 chris arnold View Post
                          We shouldn't be interested in who has the worst this or that. My father died in 1970 from lung cancer; several others of my family or in-laws have been affected, and died.

                          The real point I was trying to make is this: it's a numbers game. We are told that world wide there are 2.5millions with sci. In the UK alone, 20millions are affected, in one way or another. As both my district nurse, and the tvn who has been looking at my obdurate sacral sore, both say sci research in the UK just isn't fashionable. Talk to your GP, your spinal unit about cure: they damn well no not want to know; they glaze over and go mmm!

                          In the last 4 days a further 5000 people have signed the petition - we are now at over 15,000 - so there is support out there, we just have to tap into it. There are no doubt other and better ways of making a point about SCI research but I still think that this petition could be a valuable tool if we can get nearer our amended target of 100,000. Such a petition has not been done before, IMO it's worth pushing it to see what can happen.

                          Comment


                            This video has made a lot of Danes sign. Feel free to share.
                            (I made the music and the video 2 years after my accident c5/c6)

                            Video
                            Last edited by topperf; 21 Feb 2012, 8:28 AM.
                            "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


                              Originally posted by carbar View Post
                              In the last 4 days a further 5000 people have signed the petition - we are now at over 15,000 - so there is support out there, we just have to tap into it. There are no doubt other and better ways of making a point about SCI research but I still think that this petition could be a valuable tool if we can get nearer our amended target of 100,000. Such a petition has not been done before, IMO it's worth pushing it to see what can happen.
                              Good luck! I have signed petitions, and let's hope they hit they mark.
                              2010 SCINet 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 carbar View Post
                                In the last 4 days a further 5000 people have signed the petition - we are now at over 15,000 - so there is support out there, we just have to tap into it. There are no doubt other and better ways of making a point about SCI research but I still think that this petition could be a valuable tool if we can get nearer our amended target of 100,000. Such a petition has not been done before, IMO it's worth pushing it to see what can happen.
                                Dr. Young posted this link a few years ago in the Advocacy forum. I think it is good reading. http://www.thedailybackground.com/how-to-write-congress/

                                It has some valuable advice about online petitions.

                                Comment

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