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If the 'Cure' was like the Doomsday Clock, how close to midnight are we?

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    #31
    Originally posted by Isildur View Post
    I don´t see yet the reasons to call it our fault.
    And moan? Really?
    its been a common comment on this site for years that its our own fault there is no cure. Even Dr. Young has said as much to some extent. I think he points to the MS community as an example of how sci should be. Its a guilt thing thats hard to refute because for a lot of us just dealing with life itself is a lot and to expect to travel to a rally or some hospital is a big deal and not easy. but at the same time there are those who do make those trips and then its like what can you say. i give money but the traveling is to much for me personally. personally i can't see the emailing politicians thing being effective either considering the ocean of emails politicians get from other far larger groups. Maybe if sci became a national headline issue it would be a more effective strategy?

    nothing trumps money. if there were real money in curing sci like cancer or aids we'd be cured....

    I think the X-prize idea was a great one for sci but who knows how viable it really is....

    Comment


      #32
      Originally posted by DougB View Post
      0xSquidy.....I totally understand how you feel, but you are wrong about me. I am totally involved in Rick Hansen 'Wheels in Motion' in Canada every year and have been the top fundraiser in Winnipeg for this event (which is the largest SCI Fundraiser in Canada) for 7 years running. And, I might add, I raise my money and awareness by going door to door. Trust me, I want out of this %#@&en chair. I'd like to get on here more, but I'm always busy working for ALL of us to advance the 'Clock'. But I do totally get you.
      I'm happy to hear that, it's not common as you may know already. On the other hand, may I suggest you find what the RHI really does with your money?

      I know it's too hard already, but you should really take a look at it, and find a better platform ASAP.

      Originally posted by Fly_Pelican_Fly View Post
      All of these are true. At the same time, these issues can only be remedied by us!
      I understand what Isildur means. And totally agree with you.

      Isildur, take a look at history. Whenever there have been changes, there have been people behind them pushing, always. Push push push. The story of the world is the story of social pressure (small or big groups)

      Thinking that there's nothing you can't do is wrong and wasteful.

      If your question is "what can i do?" then we have passed the lazy/shy step and it's just a matter of researching information. But trust me, there are tons of things you and all can do that would speed up the process.
      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


        #33
        I'm going to be asking the RH Foundation for a quality of life grant for 2 things ... I have been a supporter since he wheeled around the world 25yrs ago as well as every year the Wheels in Motion event was held and have volunteered to be part of the 25th anniversary relay next year.

        I need an accessible gynecological table for my area - $12,000 tops.

        I need the Stimulette 2Denx from Anatomical Concepts as it will be the first FES machine to work on flaccidity.

        Money well spent in my opinion ... if I can access it. I've never had to ask/fight for access before.
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

        Comment


          #34
          Originally posted by lynnifer View Post
          Money well spent in my opinion
          Sure, so what? I thought it was about curing paralysis. And some other millions thought (think) the same too...

          Take a look at their financial reports, read through all the pages and let's see what you think.
          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


            #35
            Do you think you guys had an affect on the Foundation this year by your complaints on their Facebook pages - so much so that some were deleted/banned? This is the first time in 7 or 8 years that the Wheels in Motion even won't be held.

            Progress?
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

            Comment


              #36
              Originally posted by lynnifer View Post
              Do you think you guys had an affect on the Foundation this year by your complaints on their Facebook pages - so much so that some were deleted/banned? This is the first time in 7 or 8 years that the Wheels in Motion even won't be held.

              Progress?
              I have personally asked them, politely at first, about their turn towards care (leaving out cure, that's the problem) and also criticized while maintaining the same statements in their marketing/salesman front. They started throwing excuses but ultimately (after putting more pressure) they said they'll work in an official response to my (and "others's") questions.

              We are still waiting for that super shiny official response to our "very valid questions" (as they said).

              One of us was banned, but he wasn't more aggressive than me I think.

              I'm surprised that they suspended the Wheels in Motion. I don't really see how "a couple" of cripples on their facebook cancelled that.
              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


                #37
                Originally posted by lynnifer View Post
                I'm going to be asking the RH Foundation for a quality of life grant for 2 things ... I have been a supporter since he wheeled around the world 25yrs ago as well as every year the Wheels in Motion event was held and have volunteered to be part of the 25th anniversary relay next year.

                I need an accessible gynecological table for my area - $12,000 tops.

                I need the Stimulette 2Denx from Anatomical Concepts as it will be the first FES machine to work on flaccidity.

                Money well spent in my opinion ... if I can access it. I've never had to ask/fight for access before.
                I hope RH org will give you that & quit supporting things like cayak sport.. & thigs like that... would you agree on this?
                In God we trust; all others bring data. - Edwards Deming

                Comment


                  #38
                  Originally posted by lynnifer View Post
                  Do you think you guys had an affect on the Foundation this year by your complaints on their Facebook pages - so much so that some were deleted/banned? This is the first time in 7 or 8 years that the Wheels in Motion even won't be held.

                  Progress?
                  Do you think me & 2/3 others have so much power???????

                  Please prove me that it is true!

                  More likely, in my opinion, is that many many Canadians came to the same conclusions I came just by looking at RHI/RHF web site.

                  One of the very good aspects of interenet is that it is not easy as it use to be to screw up people...
                  I have been screwed too a few times and I'll do my best so that who is responsable will regreat it.

                  Now you can push your head deeper into the send... or pull it out, ponit your finger to who have screwed you and say someting like.. f you..

                  Hope you are smiling
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #39
                    Originally posted by 0xSquidy View Post
                    I have personally asked them, politely at first, about their turn towards care (leaving out cure, that's the problem) and also criticized while maintaining the same statements in their marketing/salesman front. They started throwing excuses but ultimately (after putting more pressure) they said they'll work in an official response to my (and "others's") questions.

                    We are still waiting for that super shiny official response to our "very valid questions" (as they said).

                    One of us was banned, but he wasn't more aggressive than me I think.

                    I'm surprised that they suspended the Wheels in Motion. I don't really see how "a couple" of cripples on their facebook cancelled that.
                    This is all true!
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                      #40
                      Originally posted by lynnifer View Post
                      Do you think you guys had an affect on the Foundation this year by your complaints on their Facebook pages - so much so that some were deleted/banned? This is the first time in 7 or 8 years that the Wheels in Motion even won't be held.

                      Progress?
                      So people are banned for expressing an idea! Not a good advertisement for the Foundation.

                      I have tried communicating with bodies on SCI research, including MPs, and the SIA in the UK. Silence is the grim reply. I didn't say anything rude, honest!

                      This thread has produced some very valid arguments.
                      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


                        #41
                        Originally posted by Eric.S View Post

                        I think the X-prize idea was a great one for sci but who knows how viable it really is....
                        If it is done properly an x-prize may bring in the field a good mix of competition & collaboration that can speed up things and make a difference.

                        I believe the X-Prize has been stopped by the academic sistem and also by some big SCI orgs as, a successfull X-Prize, will show how much BS there is in the academic sistem & SCI orgs...

                        I remember DA has been great supporter of the idea for long time.. Where is DA?
                        In God we trust; all others bring data. - Edwards Deming

                        Comment


                          #42
                          In my opinion, we have to care, give what money and effort we can, and be accountable to ourselves as far a the cure effort is concerned before we can expect others to care, give money, make an effort, or be accountable in regard to sci cure.

                          Personally, I do give some money to sci organizations because I have a sci but only for that reason. This is because I have a taste of how horrible sci is and because I would like to see a cure for it. But I would give more if the sci community itself showed me it cared about a cure for sci.

                          As for the list of the top 10 reasons we do not have a cure, I agree with many things on the list but say the list/comments ask others to care more, give more, and be more accountable than the sci community expects from itself. I just don't think that things work that way.

                          I am not trying to assign fault to the sci community. I am just saying that I think others would do more if we did more.
                          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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                            #43
                            The rate of the cure depends on funding. Funding for spinal cord injury research has declined substantially in the past decade.

                            1. Federal funding for spinal cord injury research is at its lowest ebb in memory. While there are no reliable statistics of how much spinal cord injury funding is being provided by NIH, I can say that it has never been harder to get grants from NIH than now. We have had nearly a decade of flat-line budget, which is essentially an annual 6% cut of the amount of research being funded per year (because the costs of reagents, animal care, instrumentation, and fringe benefits) are rising at 6% per year. Over a decade, this adds up to about 50% decline in the value of research being funded. So, even if spinal cord injury researchers have been able to remain competitive with the other subjects, the amount of spinal cord injury research has fallen by about 50% since 2001. Due to the continuing recession, the likelihood of any increase of NIH funding is nil.

                            2. Industry funding for spinal cord injury research is continuing several companies are funding spinal cord injury trials, i.e. Geron, Stemcyte, Acorda Therapeutics, Stem Cells Inc, Novartis, and a few others. Note that these companies are replacing several other companies that had been funding spinal cord injury trials but ran out of funds, i.e. Fidia, Proneuron, Alseres, and Neotherapeutics.

                            3. Foundations. The recession and the low interest rate has devastated most spinal cord injury research funding foundations. Organizations such as the Christopher Reeve Foundation have not only had difficulty raising funds due to the loss of Christopher and Dana but costs of fundraising has continued to rise while the amounts raised has fallen substantially. Only a few foundations are actually providing funding for grants to do spinal cord injury research.

                            4. State funding. Over the past decade, we have worked hard to lobby for local state (provincial) funding for spinal cord injury research in the United States and elsewhere around the world. New York and California, two of the biggest states, stopped funding spinal cord injury research this year. New Jersey took (stole) spinal cord injury research funds last year but apparently is beginning to restart the funding this year. State funding has taken a major hit and is continuing to decline as state budgetary deficits reach record levels.

                            In summary, except for some companies funding spinal cord injury clinical trials in the United States we are at the lowest funding level for spinal cord injury research in my 35 years of working in the field. We are of course not alone in these dire straits. Many other conditions, including brain injury and stroke, are in similar funding difficulties. Simply put, the cure bus is almost out of gas and we need to find some gas soon or the bus will stop.

                            Wise.

                            Comment


                              #44
                              Originally posted by paolocipolla View Post
                              There are many ways to make things happen.

                              To catch a rabbit you don't need to run faster than him
                              Yeah, but we must be practical.
                              For example in my country we are less than 100000 in a population of more than 48-49 millions. Even if we manage to be united and push together our power will make nothing to put SCI in another level. People just doesn´t give a shit about a minority condition like this, and with 5 million spaniards without job our problems are the last of a big big list of issues to solve.

                              My point is that sure, there are people who can make some things to support the research and improve it a little, but the vast mayority of people injuried have enough triying to survive everyday with crappy pensions and family/health issues. They don´t deserve that someone put the fault of the delay of the CURE over their shoulders, becase is not true.

                              Originally posted by 0xSquidy View Post

                              I understand what Isildur means. And totally agree with you.

                              Isildur, take a look at history. Whenever there have been changes, there have been people behind them pushing, always. Push push push. The story of the world is the story of social pressure (small or big groups)

                              Thinking that there's nothing you can't do is wrong and wasteful.

                              If your question is "what can i do?" then we have passed the lazy/shy step and it's just a matter of researching information. But trust me, there are tons of things you and all can do that would speed up the process.
                              How many small groups like us make a difference in history of medical advance? Can you tell me one at last? Maybe we can learn about how they did it and copy their strategy.

                              To me there is a big difference between SCI and other conditions/illness, and is that only injuried people care abot SCI, but the mayority of people is concerned about Cancer (fear) or Alzheimer. That put us in the end of th funds wagon (they give us some money in good times, but we are the first to be forgotten in bad days).
                              -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

                              -Hoc non pereo habebo fortior me

                              Comment


                                #45
                                So, what can we do specifically, as individuals and as a community, to promote awareness and gain support for our cause in order to raise substantial funds and effect positive change?
                                Somewhere, something incredible is waiting to be known. - Carl Sagan

                                How wonderful it is that nobody need wait a single moment before starting to improve the world. - Anne Frank

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