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    #31
    Back on topic, from following the progress of several other fields such as AIDS and TBI, people always talk about how difficult it is to make trials for combination drugs - it's very difficult to meet the FDA requirements for combination drugs and it is even harder to trial them than a normal drug. I guess the good news is, in my (non-expert) opinion the spinal cord injury problem seems more tractable than I would have originally thought and I think that a "cure" is definitely possible.

    Comment


      #32
      Originally posted by BUCK
      Pass the CDRPA. Done. Nothing.
      Overturn the federally funded escr ban. Done. Nothing
      FDA approval for Geron to start clinical trials. Done. Nothing. Rescinded.
      Numerous breakthroughs on a weekly basis in the five years
      that I've been injured. Disappear.
      Valid observations. In addition, some forum members have had researchers convey how close they are, or about to begin trials; then a year or two later the lab is closed or the researcher has moved and is doing something else, and not as a result of a lack of funding.

      For the newer forum members that have not traveled as many miles on the rocky SCI road, I hope we are in an era where you never have to experience what some of us have.

      I'm not defending or siding with DA, but he was fund raising, advocating, traveling, and reporting before a lot of you were even injured. Like myself, he has seen some of the great lab work, only to watch it lanquish for years and years and years.

      The missing link is clinical trials, something we all support.

      Comment


        #33
        Originally posted by maglito View Post
        DA,
        I'll make this simple.
        By saying things like 'the current system is broken' or an 'x-prize for an SCI cure would be the better way' you hurt the chances people that read and buy into your posts will help in a constructive way.

        You say, I lie.
        You say there are no posts that I could copy and paste that show you don't support clinical trials. I would argue that a great number of your posts (especially here in the Cure forum) serve to undermine the support of clinical trials. If you fail to see that, this is truly sad.

        Please, please PROVE me wrong by supporting clinical trials, not with words but with action. Go to the link in my signature and donate 30 dollars a month or simply $365 and do it each year. Then, you COPY AND PASTE the message into your signature. Then no one can say you don't support clinical trials because you have proof and you'll be advocating to others to do the same, the exact opposite of what myself and many others (including Wise Young) accuse you of doing.

        I somehow doubt you will prove me wrong by proving you support clinical trials, but I wholehearted hope you do.

        Goodnight DA.
        will you please show me and the forum where i said i didnt support clinical trials.... how hard can that be.

        Comment


          #34
          Originally posted by Buck_Nastier View Post
          I don't like DA's approach to cure advocacy or his politics. But I
          understand why he's frustrated. It seems like every goal that's
          supposed to speed up the process ends up doing little or nothing
          to help.

          Examples since I've been around:

          Pass the CDRPA. Done. Nothing.
          Overturn the federally funded escr ban. Done. Nothing
          FDA approval for Geron to start clinical trials. Done. Nothing. Rescinded.
          Numerous breakthroughs on a weekly basis in the five years
          that I've been injured. Disappear.
          I had 24 years of disappearing breakthroughs
          No doubt, Bush and the economy hurt progress, but I can't understand
          why something as valuable as a cure for sci has been ignored by
          private investment, especially if the research is so close to providing
          a treatment.
          Bush was no friend of ours, but the economy was fine for most of his years to do clinical trials. bush never upped nih funding by much, but even if he did, i doubt it would have made a difference. let me again prove it. today, under obama rule, $5 billion extra to nih. HOWEVER, none of that money can be used for clinical trial.
          huh what?
          none can be use for clinical trial. why would somebody put that as a rule?
          clearly it is obama's doing, right? no, im sure obama had nothing to do with that.
          something is wrong/corrupt with the system and it goes deeping than blaming bush or obama. bush was an easy scapegoat because of his restrictions on esc. bush is gone.
          so why is was there a 'no clinical trials' attached to the $5 billion. why was there purposely no funding of the cr bill.

          Comment


            #35
            Originally posted by Schmeky View Post
            Valid observations. In addition, some forum members have had researchers convey how close they are, or about to begin trials; then a year or two later the lab is closed or the researcher has moved and is doing something else, and not as a result of a lack of funding.

            For the newer forum members that have not traveled as many miles on the rocky SCI road, I hope we are in an era where you never have to experience what some of us have.

            I'm not defending or siding with DA, but he was fund raising, advocating, traveling, and reporting before a lot of you were even injured. Like myself, he has seen some of the great lab work, only to watch it lanquish for years and years and years.

            The missing link is clinical trials, something we all support.
            Well said, Schmeky!
            2016

            Comment


              #36
              Originally posted by DA View Post
              I had 24 years of disappearing breakthroughs


              Bush was no friend of ours, but the economy was fine for most of his years to do clinical trials. bush never upped nih funding by much, but even if he did, i doubt it would have made a difference. let me again prove it. today, under obama rule, $5 billion extra to nih. HOWEVER, none of that money can be used for clinical trial.
              huh what?
              none can be use for clinical trial. why would somebody put that as a rule?
              clearly it is obama's doing, right? no, im sure obama had nothing to do with that.
              something is wrong/corrupt with the system and it goes deeping than blaming bush or obama. bush was an easy scapegoat because of his restrictions on esc. bush is gone.
              so why is was there a 'no clinical trials' attached to the $5 billion. why was there purposely no funding of the cr bill.
              Fix it then.

              Comment


                #37
                Originally posted by Schmeky View Post
                Valid observations. In addition, some forum members have had researchers convey how close they are, or about to begin trials; then a year or two later the lab is closed or the researcher has moved and is doing something else, and not as a result of a lack of funding.

                For the newer forum members that have not traveled as many miles on the rocky SCI road, I hope we are in an era where you never have to experience what some of us have.

                I'm not defending or siding with DA, but he was fund raising, advocating, traveling, and reporting before a lot of you were even injured. Like myself, he has seen some of the great lab work, only to watch it lanquish for years and years and years.

                The missing link is clinical trials, something we all support.
                Fix it then.

                Comment


                  #38
                  Schmecky, you are right, period. Clinical trials WITH POSITVE RESULTS will initiate a new pattern of discussion. That is the direction we should all be pointing to. We need success leading to optimism and new hope. Nothing else discussed can supercede that. Thanks

                  T.J.

                  Comment


                    #39
                    Originally posted by DA View Post
                    I had 24 years of disappearing breakthroughs


                    Bush was no friend of ours, but the economy was fine for most of his years to do clinical trials. bush never upped nih funding by much, but even if he did, i doubt it would have made a difference. let me again prove it. today, under obama rule, $5 billion extra to nih. HOWEVER, none of that money can be used for clinical trial.
                    huh what?
                    none can be use for clinical trial. why would somebody put that as a rule?
                    clearly it is obama's doing, right? no, im sure obama had nothing to do with that.
                    something is wrong/corrupt with the system and it goes deeping than blaming bush or obama. bush was an easy scapegoat because of his restrictions on esc. bush is gone.
                    so why is was there a 'no clinical trials' attached to the $5 billion. why was there purposely no funding of the cr bill.
                    You have a lot of questions for somebody who is supposedly omniscient. I assume that they are mostly rhetorical. Let me take some of them.

                    Why didn't Obama allow clinical trials to be funded by the $5 billion stimulus allocation to NIH? Given that Obama did not campaign on promises to increase NIH funding and there has been nary a peep from people for increased spinal cord injury clinical trial funding, why are you surprised that little or none of the $5 billion stimulus money allocated to NIH was designated for spinal cord injury clinical trials? In Washington DC, you don't ask, you don't get.

                    Why was there purposely no funding of the CDRPA? I find it strange that you should ask this question. Based on everything that you have said to date, you don't want NIH to get any money. You think that it is a waste of time. So, why are you asking the question? Aren't you glad that it did not get funding? You also say "purposely" but don't mention who or why. There are lots of things that are not funded in Washington DC.

                    The government is like the mother bird that has landed in her nest with worms in her beak for her young birds with their mouth open and lustily peeping for attention and food. You think that the spinal cord injury chick not only should not peep for worms but it should close its mouth and turn its back. The mother bird will not peck the spinal cord injury chick on the head and force the worm into its mouth. The chick is going to be hungry.

                    Finally, let me ask a question. Why is it my responsibility to raise money for spinal cord injury clinical trials and not yours?

                    Wise.

                    Comment


                      #40
                      Originally posted by Wise Young View Post
                      ...Finally, let me ask a question. Why is it my responsibility to raise money for spinal cord injury clinical trials and not yours?

                      Wise.
                      .....
                      Please donate a dollar a day at http://justadollarplease.org.
                      Copy and paste this message to the bottom of your signature.

                      Thanks!

                      Comment


                        #41
                        Wise, as you explain the ins and outs of NIH, trials, and funding, we, or at least I learn. As you can see, there is energy on this board to raise funding. At the very least, each one of us should lookl at $1 day and contribute. I still think that once a trial shows progress, funding and snowballing will follow. Do you agree?

                        Comment


                          #42
                          Originally posted by keeping on View Post
                          Wise, as you explain the ins and outs of NIH, trials, and funding, we, or at least I learn. As you can see, there is energy on this board to raise funding. At the very least, each one of us should lookl at $1 day and contribute. I still think that once a trial shows progress, funding and snowballing will follow. Do you agree?
                          I cannot speak for Wise, but I will share my opinion:
                          It could be helpful if it was progress that was understood by the public. But even that is not a certainty. Things like progress in other areas of medicine can be competition and/or a detraction. Similarly, things like recessions cause everyone to tighten their wallets. Indications are that people continue to give generously now, but to things like food banks. To many people, research of any sort is a luxury.
                          While I encourage optimism, I caution against thinking in absolutes. We have to continue on with or without the snowball effect. That is the one certainty I believe in.
                          You will find a guide to preserving shoulder function @
                          http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                          See my personal webpage @
                          http://cccforum55.freehostia.com/

                          Comment


                            #43
                            Originally posted by SCIfor55yrs. View Post
                            I cannot speak for Wise, but I will sh ofare my opinion:
                            It could be helpful if it was progress that was understood by the public. But even that is not a certainty. Things like progress in other areas of medicine can be competition and/or a detraction. Similarly, things like recessions cause everyone to tighten their wallets. Indications are that people continue to give generously now, but to things like food banks. To many people, research of any sort is a luxury.
                            While I encourage optimism, I caution against thinking in absolutes. We have to continue on with or without the snowball effect. That is the one certainty I believe in.
                            That goes true for the general public, but one would hope that once a SCI clinical trial has shown tangible evidence of recovery, even if just one or two levels of function or sensation, or both, that the SCI community would finally get serious about fighting for their own cause. If a positive, successful trial doesn't have a correlating effect on those of us with SCI in regards to activism and lobbying for funds, then any cure will be a long time in the coming.
                            Please donate a dollar a day at http://justadollarplease.org.
                            Copy and paste this message to the bottom of your signature.

                            Thanks!

                            Comment


                              #44
                              Originally posted by Wise Young View Post
                              You have a lot of questions for somebody who is supposedly omniscient. I assume that they are mostly rhetorical. Let me take some of them.

                              Why didn't Obama allow clinical trials to be funded by the $5 billion stimulus allocation to NIH? Given that Obama did not campaign on promises to increase NIH funding and there has been nary a peep from people for increased spinal cord injury clinical trial funding, why are you surprised that little or none of the $5 billion stimulus money allocated to NIH was designated for spinal cord injury clinical trials? In Washington DC, you don't ask, you don't get.
                              because nih is corrupt. there are plenty of people asking for sci trials, many for years, and even i was writing those stupid letters...well sue wrote mine...grammar.
                              all we got was the middle finger.

                              Why was there purposely no funding of the CDRPA? I find it strange that you should ask this question. Based on everything that you have said to date, you don't want NIH to get any money. You think that it is a waste of time. So, why are you asking the question? Aren't you glad that it did not get funding? You also say "purposely" but don't mention who or why. There are lots of things that are not funded in Washington DC.
                              I ask to point out the corrupt system. as much as your mindless butt kissing members may wish for, DA is not the reason congress didnt fund the bill. and neither is our courageous members who got the bill passed. PS. I think everyone noticed how you dodged the issue.

                              The government is like the mother bird that has landed in her nest with worms in her beak for her young birds with their mouth open and lustily peeping for attention and food. You think that the spinal cord injury chick not only should not peep for worms but it should close its mouth and turn its back. The mother bird will not peck the spinal cord injury chick on the head and force the worm into its mouth. The chick is going to be hungry.

                              Finally, let me ask a question. Why is it my responsibility to raise money for spinal cord injury clinical trials and not yours?

                              Wise.
                              dont insult a loving caring mother bird with our government. a better example would be a $2 whore. paying off congress gets us anything we want... ask the unions how they do it.
                              how you think obama got health care to pass....bribes?


                              i never ask you to raise money for us. but it would be the humane thing to do.
                              if i live to see a cure, i will not every take my new freedom for granted. i will pick a uncured disease and raise tons of money to cure it...without them asking.

                              Comment


                                #45
                                Originally posted by rdf View Post
                                That goes true for the general public, but one would hope that once a SCI clinical trial has shown tangible evidence of recovery, even if just one or two levels of function or sensation, or both, that the SCI community would finally get serious about fighting for their own cause. If a positive, successful trial doesn't have a correlating effect on those of us with SCI in regards to activism and lobbying for funds, then any cure will be a long time in the coming.
                                I would hope so, but I have a lot of doubts. I admit, I have difficulty in understanding the "I want it all, and I want it now" generation. From my perspective, the difficult jobs are done with patience, persistence, and hard work over the long haul. Second, my generation has always looked unselfishly beyond ourselves and had a commitment to making things better for future generations. That is what has kept me hanging in there, through good times and bad, and success and failure. Today's generation seem ready to abandon anything that does not have an immediate and substantial payback. Progress in small steps seems not to impress many, yet that is the way difficult problems get solved. As I have said before, wars are not won in a single battle, yet that seems to be the expectation. Also, just as leadership in the civil rights movement has dwindled as things have gotten better for African-Americans, the same thing seems to be affecting disability group leadership since the passage of ADA and some technological and medical advances that have improved the lives of many. It takes strong leaders to keep the troops fighting when under duress.

                                Anyhow, that is this "old buzzard's" opinion.
                                You will find a guide to preserving shoulder function @
                                http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                                See my personal webpage @
                                http://cccforum55.freehostia.com/

                                Comment

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