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    #31
    Wise, I also might say, we know you are working as hard as possible and trying to get the optimum time frame of testing. I recognoze that and cheer your work for us. I'm just trying to see what we can do to speed this up. the treatments in Hong Kong seem to be moving along as you mentioned that the first dosage was safe and now you've moved to higher doeses on the next patients. I would like to say that if improvements are found; we will know as a soon as possible despite the fact that phase 1 is for safety and not for efficay. I'm trying ti understand how in one moment the trails in the US are now a year further out. As I've said before, this is a statemnet of yours and others that comes out of nowhere but is a lifetime to us.

    keeping on
    Last edited by keeping on; 6 Feb 2011, 2:24 PM.

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      #32
      Originally posted by keeping on View Post
      ...I'm trying ti understand how in one moment the trails in the US are now a year further out. ...

      keeping on
      Hi there keeping on,

      Maybe we should put together an expected/actual timeline of events for the various SCINet trials. Perhaps there is some confusion between the different phases expected to be undergoing clinical trial.

      I think it is still expected that phase 2 (phase 1?) trial will begin at Brackenridge in Austin, TX this summer, and Wise said they are hoping for phase 3 trial at Brackenridge in 2012. Please correct me if I'm wrong.
      Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
      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.

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        #33
        faster, I didn't see that in Wise's explantion. If you are right, and I hope you are. wise should tell us. Hope you are right and the trials will start as explanied. I have my doubts though. Simply, Wise should say, if true, the trials will start in the US as previously expected in early 2011.

        Thnaks Faster, keeping on

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          #34
          Chill out

          I have been with Wise since Spinewire days and am in my 43rd year post sci.Stop harrasing him, he just posted his schedule and the fact there is only 2 people and him to do the work in Hong Kong plus teach 2 courses at Rutgers. My sister teaches 2 courses at Barry University in south Florida and the course preparation and all the other responsiblities are huge.It was 12 or 13 years ago we dreamed of this on Spinewire and Wise has singlehandedly made it a reality to help us. He was the only one who gave us all hope then and still continues with an open house the 1st of each month. If you can't get there to listen 1 st hand then at least have the manners to let him post when he is good and ready.Do you think sarcasm or desperate pleas will make him answer any quicker ??
          I would trust my life with him and I hope other older members will rally to tell him we have faith in all his decisions and how much he is appreciated.

          Comment


            #35
            Originally posted by FasterNow View Post

            Maybe we should put together an expected/actual timeline of events for the various SCINet trials. Perhaps there is some confusion between the different phases expected to be undergoing clinical trial..
            Good idea. We should as a community have a solid list of ongoing and proposed trials and their timeframes. It wouldn't be difficult, for my own reference I threw a rough incomplete list on a website...it needs work but it is a sketch. Http://chazsouthard.org/wind/potential-remedies/

            My guess why Wise's trials may be delayed is $. We have all read this time and time again. Nothing new. Now we have a target, the trial in Texas. I wish I knew more about fundraising, but if we as a community could bond enough to spark one trial or speed it up we all would be a tiny piece of making the world better. Justadollarplease.org is one way, anyone have other ideas?

            I know I owe the cc community for it's support. Many times my life/body has been sustained thanks to the care forum and been able to keep my spirit and thirst for possibility here. So I'm here to help in any way.

            Comment


              #36
              Originally posted by mikek View Post
              I have been with Wise since Spinewire days and am in my 43rd year post sci.Stop harrasing him, he just posted his schedule and the fact there is only 2 people and him to do the work in Hong Kong plus teach 2 courses at Rutgers. My sister teaches 2 courses at Barry University in south Florida and the course preparation and all the other responsiblities are huge.It was 12 or 13 years ago we dreamed of this on Spinewire and Wise has singlehandedly made it a reality to help us. He was the only one who gave us all hope then and still continues with an open house the 1st of each month. If you can't get there to listen 1 st hand then at least have the manners to let him post when he is good and ready.Do you think sarcasm or desperate pleas will make him answer any quicker ??
              I would trust my life with him and I hope other older members will rally to tell him we have faith in all his decisions and how much he is appreciated.
              Well Said

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                #37
                I'm not sure if I qualify as an older member but I am middle-aged, several decades post SCI and somewhat new to this site. But I would like to say...

                Keep up the great work Dr. Young. When I went through rehab I was trained to accept my SCI as is and do the best I could with what I had. I have done this while quietly hoping that advancements will continue to accumulate. I don't know if I'll ever directly benefit from your efforts but from the posts of yours that I've read I think your professional life's work is progressing nicely and will one day reap great rewards.

                Comment


                  #38
                  Originally posted by Chaz19 View Post
                  Good idea. We should as a community have a solid list of ongoing and proposed trials and their timeframes. It wouldn't be difficult, for my own reference I threw a rough incomplete list on a website...it needs work but it is a sketch. Http://chazsouthard.org/wind/potential-remedies/

                  My guess why Wise's trials may be delayed is $. We have all read this time and time again. Nothing new. Now we have a target, the trial in Texas. I wish I knew more about fundraising, but if we as a community could bond enough to spark one trial or speed it up we all would be a tiny piece of making the world better. Justadollarplease.org is one way, anyone have other ideas?

                  I know I owe the cc community for it's support. Many times my life/body has been sustained thanks to the care forum and been able to keep my spirit and thirst for possibility here. So I'm here to help in any way.
                  Good list! Are you sticking to US trials only?

                  Your guess is my guess too. Fundraising is not easy.

                  Comment


                    #39
                    Dr wise, this may seem a silly question.
                    I was taking litium as daily medication when I was injured. I took it for two years, and I recal feeling the neuro pain develop right around that time getting steadily worse as I was taken off of it. the burn, stabbing, and broken glass feeling was more of a background feeling until about then. I later began using neurontin. that didnt work well for me. I never took either drug again, but is it possible the lithium held off the neuro pain? or treated the neuro pain? that pain actually lead to my diagnosis of cauda equina syndrome, AD, and I developed hoffmans signs that I still have. do you think there would be a connection between my stopping lithium and my regression back to square one so to speak? it was kinda like getting hit all over again. I went on fentynal then and have been on it ever since. though I have regained sensation, the pain just got worse and worse. I find it really interesting that lithium is a part of the cure. like, amazing in fact.

                    Comment


                      #40
                      Originally posted by jody View Post
                      Dr wise, this may seem a silly question.
                      I was taking litium as daily medication when I was injured. I took it for two years, and I recal feeling the neuro pain develop right around that time getting steadily worse as I was taken off of it. the burn, stabbing, and broken glass feeling was more of a background feeling until about then. I later began using neurontin. that didnt work well for me. I never took either drug again, but is it possible the lithium held off the neuro pain? or treated the neuro pain? that pain actually lead to my diagnosis of cauda equina syndrome, AD, and I developed hoffmans signs that I still have. do you think there would be a connection between my stopping lithium and my regression back to square one so to speak? it was kinda like getting hit all over again. I went on fentynal then and have been on it ever since. though I have regained sensation, the pain just got worse and worse. I find it really interesting that lithium is a part of the cure. like, amazing in fact.
                      Jody, I don't have a good answer. All that I know is that we have had some results in a clinical trial and we need to confirm it. You are actually the first person that I know who was taking lithium at the time of spinal cord injury.

                      Wise.

                      Comment


                        #41
                        I, for one, greatly appreciate the time Wise spends here trying to answer questions and concerns. I think it's unrealistic to try to put a time frame to much of this....we wish it were otherwise, and I'm sure Wise wishes the same thing.

                        I have'nt been sci as long as some of you and heard the "in ten years we'll have an answer" before. I just know, or believe.....you can't put a time frame on the work. There are too many variables and issues. There always seems to be a money issue. How is any of the work going to be done.....or finished...without funding?

                        I don't think insults or accusations will get the work done any faster, and I'm sure much is said in just pure and simple frustration. I feel much the same way about the chronic pain I develped at the same time as sci. Why isn't there more studies done on neuropaathy? My guess, funding. That, and I'm sure all of the companies making anti seizure and pain meds would go broke without us. But that's a rant and rave for another time.....

                        Wise, thanks for all you do. I know how thin you're spreading yourself and how hard you work. I wish I lived close enough to attend an open house, and with a different topic and speaker every month, it sounds like it would be a worthwhile event to attend often.

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                          #42
                          Originally posted by mikek View Post
                          I have been with Wise since Spinewire days and am in my 43rd year post sci.Stop harrasing him, he just posted his schedule and the fact there is only 2 people and him to do the work in Hong Kong plus teach 2 courses at Rutgers. My sister teaches 2 courses at Barry University in south Florida and the course preparation and all the other responsiblities are huge.It was 12 or 13 years ago we dreamed of this on Spinewire and Wise has singlehandedly made it a reality to help us. He was the only one who gave us all hope then and still continues with an open house the 1st of each month. If you can't get there to listen 1 st hand then at least have the manners to let him post when he is good and ready.Do you think sarcasm or desperate pleas will make him answer any quicker ??
                          I would trust my life with him and I hope other older members will rally to tell him we have faith in all his decisions and how much he is appreciated.
                          mikek,my excuse for being sarcastic is that the Dr.Wise's promise that "in year or two the world will change" sounds like unsubstantiated forecast.

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                            #43
                            When it comes to a cure, Wise has stated very clearly that he will be trying different combinations with increasing cell amounts.I never heard a promise. Sarcastic remarks will only alienate you !! It is also such a waste of energy !!

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                              #44
                              The timeline for clinical trials has not changed. This year Phase II at Brackenridge, Phase 3 at participating US Centers in 2012.

                              Comment


                                #45
                                Thank you Jim, this makes things a lot clearer.

                                keeping on

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