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  • #46
    Originally posted by quadfather View Post
    Other than that we are golden...
    It seams so - but I really think there is a new shift out there now, like more and more sci clinicians also believes that it is possible to address the spinal cord itself, to thry to fix what is injured. I don't think based on what I see there is a problem with what one names the fix.

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    • #47
      Originally posted by Chaz19 View Post
      Sounds good Kate. I think I have been out of the loop regarding federal funds and legislation. Is there a reason why the W2W's are no longer political rallies and held in Washington DC?
      Good question. Others on the board might want to chime in, but here's my answer . . . we had a couple of serious requests from the congress, remember?

      Pass the CDRPA and fund escr.

      Done and done. There is an argument for taking the next step and pushing for more money at NIH plus funding for CDRPA -- but realistically, in this economic climate, how likely is it that we're going to make headway? And if there is not a lobbying effort to manage, why DC?

      We also made the decision to take the show on the road because we wanted to reach as many people in the country as possible. Last year in Chicago that decision paid off in the sense that a majority of people at the conference were first-timers -- people who could drive to Chicago but could not have afforded to fly to DC.

      The Southwest has some advantages that other places don't -- reasonable rates, great weather, very accessible cities, which -- we think! -- will translate into another set of new people showing up to hear the scientists and get some energy around pushing for progress. You never know what will be sparked at these things, either among the scientists or among the participants.

      Working 2 Walk is fun. I'd do it every quarter, all around the USA if I could.

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      • #48
        Approximately 40-50 Million Dollars annually (my guesstimate) is being spent on sham treatments (sci). Doctors & Centers that provide the same cells, time and time again, with the same non-result.

        Albert Einstein said, Insanity is doing the same thing over and over again and expecting different results.

        Conducting a fee based clinical trial network would move the process to a solution at a much faster pace. But we couldn't do that right, it would be unethical. Instead, lets all just remain paralyzed...and quiet.


        btw- Leif, Cancer is not cured, it's managed.

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        • #49
          Originally posted by chasb View Post
          btw- Leif, Cancer is not cured, it's managed.
          For example, some leukemia can be cured, not just managed, and it is cured by stem cells.

          Comment


          • #50
            Kate- Thanks for your explanation. My thoughts regarding DC are more about PR and advocacy. A newspaper may do a story on someone that is traveling down to Washington to advocate for restorative function. It is a harder story to sell if a patient is traveling to the southwest to meet researchers.

            Another topic which I think still needs to be discussed is the CD RPA. I don't see it separate from binding the community socially and potentially restoring function through some of its provisions. It is great that it is a bill. I'm very thankful for all the hard work that has been done -- but... Where is the money ??? and when is it coming?

            chasb- I agree that patient a patient sponsored clinical trial network is the way to go. Personally, I don't have the funds to support myself but the fact that others do and would pick up the speed of the trials -- to me makes it ethical. My perspective is that...I couldn't afford the first iPhone -- but if I wanted to I could pick up the third-generation.

            I think ethical code need to be realistic and adapt to the circumstance. I guess I'm not in absolutist like Kant.

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            • #51
              Originally posted by quadfather View Post
              Check your history

              http:///index.php?page=viewarticle&a...ntSchedule.htm

              Things have 'looked promising' for quite a while now
              The most important step IMO is starting clinical trials. This is happening. The science to cure paralysis may already have been discovered and just needs to be tested in clinical trials. The SCI Community has the power to make these trials happen by helping to spread awareness and raise money. The ball is in our court.

              Comment


              • #52
                I'd participate if you came to Dallas.
                Originally posted by kate View Post
                Good question. Others on the board might want to chime in, but here's my answer . . . we had a couple of serious requests from the congress, remember?

                Pass the CDRPA and fund escr.

                Done and done. There is an argument for taking the next step and pushing for more money at NIH plus funding for CDRPA -- but realistically, in this economic climate, how likely is it that we're going to make headway? And if there is not a lobbying effort to manage, why DC?

                We also made the decision to take the show on the road because we wanted to reach as many people in the country as possible. Last year in Chicago that decision paid off in the sense that a majority of people at the conference were first-timers -- people who could drive to Chicago but could not have afforded to fly to DC.

                The Southwest has some advantages that other places don't -- reasonable rates, great weather, very accessible cities, which -- we think! -- will translate into another set of new people showing up to hear the scientists and get some energy around pushing for progress. You never know what will be sparked at these things, either among the scientists or among the participants.

                Working 2 Walk is fun. I'd do it every quarter, all around the USA if I could.
                Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

                My Myspace


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                • #53
                  Originally posted by Jim View Post
                  The most important step IMO is starting clinical trials. This is happening. The science to cure paralysis may already have been discovered and just needs to be tested in clinical trials. The SCI Community has the power to make these trials happen by helping to spread awareness and raise money. The ball is in our court.
                  Just curious, but how long do SCI clinical trials usually take before they are deemed a success or failure? If they started human trials today how long would it be before they'd be available to us all?

                  I found this on Wikipedia "On average, about 8 years pass from the time a cancer drug enters clinical trials until it receives approval from regulatory agencies for sale to the public."

                  Please tell me it can't be that long for us.

                  Comment


                  • #54
                    Originally posted by tumbleweeds View Post
                    Just curious, but how long do SCI clinical trials usually take before they are deemed a success or failure? If they started human trials today how long would it be before they'd be available to us all?

                    I found this on Wikipedia "On average, about 8 years pass from the time a cancer drug enters clinical trials until it receives approval from regulatory agencies for sale to the public."

                    Please tell me it can't be that long for us.
                    Well, some might say that it's already been a while..
                    "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.

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                    • #55
                      Originally posted by tumbleweeds View Post
                      Just curious, but how long do SCI clinical trials usually take before they are deemed a success or failure? If they started human trials today how long would it be before they'd be available to us all?

                      I found this on Wikipedia "On average, about 8 years pass from the time a cancer drug enters clinical trials until it receives approval from regulatory agencies for sale to the public."

                      Please tell me it can't be that long for us.
                      #
                      i am not sure but i do hope it comes quick if they start trials this year roll on to 2011 i hope then. they will be a bit closer to start on completes i do hope this year is not a false one [IMG]/forum/images/icons/icon9.gif[/IMG]
                      AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


                      http://justadollarplease.org

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                      • #56
                        They can't even treat pain to make life tolerable.
                        Alan

                        Proofread carefully to see if you any words out.

                        Comment


                        • #57
                          Originally posted by quadfather View Post
                          Once we can effectively treat most new injuries, we chronics will be forgotten.
                          Once effective treatments are here for acutes there will be less acutes who progress tobecome chronics so from that perspective chronics will be forgotten about in the very distant future. Looking less far ahead, I believe that an effective treatment for acutes would be a stimulus to solve the problems in chronics because it would clearly demonstrate effective recovery from spinal cord injury in humans and there are still a very large number of chronics.
                          As has abeen said, clinical trial are the key. They are the key to finding an effective solution and they are the key to keeping hope alive.

                          Comment


                          • #58
                            We can't let up!!

                            We have to be unified in our voice for chronics. We mustn't let up for a cure. We have to be adamant for human trials to go forward. This coulc be the year; maybe here or maybe overseas. It doesn't really matter as long as it gets credibly done.

                            Good luck to all

                            T.J.

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