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  • Cervical possibilities for later scinetusa trials

    Heyo Jim

    If possible could you please tell me all that youre able to about the possible or already seen or not implications for recovery from this therapy on arms or hands. I mean, as you know hand, arm and finger function return are the most wanted things for quads. I have taken it that arm and hand function didn't return but you are looking at things to 'rehab' the forelimbs, are you able to give me any information on how that might work? Are there going to be like certain apparatuses that rehab the arms? hands and fingers? What about umbilical cord blood transplant + Rehab + epidural stimulation? Does that seem like a good combo?
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    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

  • #2
    No Money

    Originally posted by lunasicc42 View Post
    Heyo Jim

    If possible could you please tell me all that youre able to about the possible or already seen or not implications for recovery from this therapy on arms or hands. I mean, as you know hand, arm and finger function return are the most wanted things for quads. I have taken it that arm and hand function didn't return but you are looking at things to 'rehab' the forelimbs, are you able to give me any information on how that might work? Are there going to be like certain apparatuses that rehab the arms? hands and fingers? What about umbilical cord blood transplant + Rehab + epidural stimulation? Does that seem like a good combo?
    From page 9 of Open House Presentation Notes FINAL

    " What is the timeframe from one wave to the next? To the next trial?

    Dr. Young:
    This is all talk. We have not raised the money for this. If the company is successful in this, if company
    raises $30 million then this is all possible. We can try to get NIH funding. "

    Comment


    • #3
      I know... I am inquiring about possible return of function to the arms, not funds in that question
      "That's not smog! It's SMUG!! " - randy marsh, southpark

      "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


      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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      • #4
        I endorse Luna's inquiry here

        Comment


        • #5
          Luna have you inquired about the ReNext Bio clinical trail? Would you be interesting in that trail or are you waiting for stem cells?

          Comment


          • #6
            Hands come in handy

            Originally posted by spayne View Post
            From page 9 of Open House Presentation Notes FINAL

            " What is the timeframe from one wave to the next? To the next trial?

            Dr. Young:
            This is all talk. We have not raised the money for this. If the company is successful in this, if company
            raises $30 million then this is all possible. We can try to get NIH funding. "
            Sorry lunasicc42 ..

            I have had this injury for 28 years and very tired of false hope.

            Comment


            • #7
              Originally posted by Sparky831 View Post
              Luna have you inquired about the ReNext Bio clinical trail? Would you be interesting in that trail or are you waiting for stem cells?

              Yo, coincidentally I just sent an e-mail to them a few days ago and they actually responded wanting to know more about some other medical issues that I have (syrinx, baclofan pump )... I replied with another e-mail of that information and am waiting to see if they get back to me... I just want to be officially screened, that would be great
              "That's not smog! It's SMUG!! " - randy marsh, southpark

              "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


              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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              • #8
                Originally posted by lunasicc42 View Post
                Yo, coincidentally I just sent an e-mail to them a few days ago and they actually responded wanting to know more about some other medical issues that I have (syrinx, baclofan pump )... I replied with another e-mail of that information and am waiting to see if they get back to me... I just want to be officially screened, that would be great
                Nice so if after you went to get screened and if everything checked out would you proceed with the trail?

                Comment


                • #9
                  Originally posted by Sparky831 View Post
                  Nice so if after you went to get screened and if everything checked out would you proceed with the trail?

                  Ideally "yes"... But it really depends on if and how they reply. Might not even be an issue, one can hope. It's still really early in the application process for me... Not even official
                  "That's not smog! It's SMUG!! " - randy marsh, southpark

                  "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                  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


                  • #10
                    Originally posted by Sparky831 View Post
                    Nice so if after you went to get screened and if everything checked out would you proceed with the trail?
                    Can I ask why you are asking the question?
                    Not meaning to infer anything, just want to understand the thinking behind why people would not want to apply for trials - or why you think they might not apply?
                    If is a safety thing I understand, but if its for some other reason it would be interesting to know.
                    If its an assurance thing, then what assurances were you thinking of?
                    Etc.

                    Comment


                    • #11
                      Originally posted by niallel View Post
                      Can I ask why you are asking the question?
                      Not meaning to infer anything, just want to understand the thinking behind why people would not want to apply for trials - or why you think they might not apply?
                      If is a safety thing I understand, but if its for some other reason it would be interesting to know.
                      If its an assurance thing, then what assurances were you thinking of?
                      Etc.
                      Well I asked the question because enrolling in that trail would probably prohibit you from enrolling in any future SCI trails? I hope this is not case though.

                      Comment


                      • #12
                        Originally posted by Sparky831 View Post
                        Well I asked the question because enrolling in that trail would probably prohibit you from enrolling in any future SCI trails? I hope this is not case though.
                        Thanks, thats an interesting point I'd not thought about before.

                        A lot of other trials let people who have had other treatments as long as the period after the first trial is sufficiently long that any changes would have finished.
                        Having said that it would be good if there was more compassionate use options for people who had been on previous trials - although this rarely seems to happen (if ever).

                        Comment


                        • #13
                          Originally posted by lunasicc42 View Post
                          Heyo Jim

                          If possible could you please tell me all that youre able to about the possible or already seen or not implications for recovery from this therapy on arms or hands. I mean, as you know hand, arm and finger function return are the most wanted things for quads. I have taken it that arm and hand function didn't return but you are looking at things to 'rehab' the forelimbs, are you able to give me any information on how that might work? Are there going to be like certain apparatuses that rehab the arms? hands and fingers? What about umbilical cord blood transplant + Rehab + epidural stimulation? Does that seem like a good combo?
                          In order for hand/finger function to return, one must exercise each muscle. Two possible devices are an electric stim simulator from Bioness, and vibrating dumbells from Galileo.

                          Originally posted by niallel View Post
                          Thanks, thats an interesting point I'd not thought about before.

                          A lot of other trials let people who have had other treatments as long as the period after the first trial is sufficiently long that any changes would have finished.
                          Having said that it would be good if there was more compassionate use options for people who had been on previous trials - although this rarely seems to happen (if ever).
                          We allow applications from those who have had other treatments more than 6 months ago with no changes.

                          Comment


                          • #14
                            Originally posted by Jim View Post
                            In order for hand/finger function to return, one must exercise each muscle. Two possible devices are an electric stim simulator from Bioness, and vibrating dumbells from Galileo.



                            We allow applications from those who have had other treatments more than 6 months ago with no changes.

                            So I have taken it that "in theory ", the cell transplant regenerates the spinal cord which is a conduit to controlling the muscles, but the muscles need to be "reawakened" by rehab to take advantage of the cord being reconnected... So why not add epidural stimulation as sort of a rehab component?

                            Lol, am I even making any sense? I am no spinal cord researcher
                            What about that?
                            "That's not smog! It's SMUG!! " - randy marsh, southpark

                            "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                            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


                            • #15
                              Anthony, we cant combine UCB injections + intensive walking with another therapy until we confirm that it is effective. The results from the trial in China were excellent but they don't mean anything if the US IIb trial doesn't show similar results. If the positive results are confirmed, the therapy can be combined with another.

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