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  • #46
    Exactly man! Waste of time, no interest must be nice. I really envy you! there is nothing more relevant on this forum then treatments, and how we can get them as quickly as possible. Right to try!

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    • #47
      Originally posted by Dlevy View Post
      http://www.cnbc.com/id/101860676
      i thought this interesting. I consider my condition terminal.
      According to the The National SCI Statistical Center

      " Life expectancies for persons with SCI are still significantly below life expectancies for those without SCI and have not improved since the 1980s"

      If you look in particular to high cervical injury SCI is definitely a terminal condition. That should put it into the "right to try zone".
      https://www.nscisc.uab.edu/PublicDoc...cts%202014.pdf

      We have to keep in mind that the "righ to try" at the moment is for therapies that have cleared Phase II trial (safety).

      People have the right to try anything they want if they just travel to clinics around the world, so I think it would be better to give them the right to try a therapy with proper informed consent and in scientifically controlled manner so that at least reliable data can be collected.

      Paolo
      In God we trust; all others bring data. - Edwards Deming

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      • #48
        Originally posted by lunasicc42 View Post
        http://www.thelifesciencesreport.com...-r-lee-buckler


        GRAMMY, do you think that the US should and even would consider adopting this or something like it?
        This new legislation is designed to expedite development of regenerative medicine solutions for all manner of disease, so it seems logical to me that a similar regulation should be adopted by the US and proper advocacy actions should be taken by all patients orgs that want a cure for their condition/deseases to make that happen.
        Unfortunately there seem to be a very passive attitude from our main SCI orgs.

        Paolo
        In God we trust; all others bring data. - Edwards Deming

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        • #49
          It would be very interesting to see a list compiling what is being done by countries in South America, Europe and Asia. The U.S. is not alone in providing state of the art medicine.

          Originally posted by paolocipolla View Post
          This new legislation is designed to expedite development of regenerative medicine solutions for all manner of disease, so it seems logical to me that a similar regulation should be adopted by the US and proper advocacy actions should be taken by all patients orgs that want a cure for their condition/deseases to make that happen.
          Unfortunately there seem to be a very passive attitude from our main SCI orgs.

          Paolo

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          • #50
            This group, some of which are very knowledgeable about various therapies, should assemble information on therapies. Wouldn't that be a wonderful purpose of Internet forums? There is an extensive amount of unbiased knowledge that I wish could help SCI sufferers. For instance, explanation of therapies, location, underlying politics, relative cost, history, etc.

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            • #51
              There is a ton of information in the posts here. I find the search function pretty useful.

              Originally posted by Dlevy View Post
              This group, some of which are very knowledgeable about various therapies, should assemble information on therapies. Wouldn't that be a wonderful purpose of Internet forums? There is an extensive amount of unbiased knowledge that I wish could help SCI sufferers. For instance, explanation of therapies, location, underlying politics, relative cost, history, etc.

              Comment


              • #52
                Originally posted by c473s View Post
                There is a ton of information in the posts here. I find the search function pretty useful.
                I don't think the search function is particularly useful for what he wants to know. Most of the time the thread titles seem to consist of "OMG new cure!", or the like.

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                • #53
                  Advanced search picks up words in posts as well. A lot of "hits" but it is relatively easy to narrow down and the reading to get there is at least educational.

                  Originally posted by taymas View Post
                  I don't think the search function is particularly useful for what he wants to know. Most of the time the thread titles seem to consist of "OMG new cure!", or the like.

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                  • #54
                    Originally posted by paolocipolla View Post
                    This new legislation is designed to expedite development of regenerative medicine solutions for all manner of disease, so it seems logical to me that a similar regulation should be adopted by the US and proper advocacy actions should be taken by all patients orgs that want a cure for their condition/deseases to make that happen.
                    Unfortunately there seem to be a very passive attitude from our main SCI orgs.

                    Paolo
                    Agreed. Too much inspiration talk and not enough we need to save this human life because his/her life expectancy is significantly reduced. Terminal illness categorization would mahke people realize urgency w/o the verbose explanations as to why.

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                    • #55
                      The FDA'S Caution Is Hazardous To Our Health Full Debate-Intelligence Squared U.S.

                      https://www.youtube.com/watch?v=3Ro6YquOmPw
                      In God we trust; all others bring data. - Edwards Deming

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