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    Jim about when do we get media?
    "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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      Is this the trial posting - https://clinicaltrials.gov/ct2/show/NCT03979742

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        No, not posted yet.

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          Originally posted by Jim View Post
          No, not posted yet.
          Do you mean not posted yet, or not recruiting yet?

          If not posted yet, what's this trial?
          https://clinicaltrials.gov/ct2/show/NCT03979742

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            Not recruiting

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              Question regarding umbilical cord blood and tissue

              [QUOTE=Jim;1877089]Hey Doug,

              "The chances are, the cord blood won't be useful for your grand child's parents, or you. The great thing about umbilical cord blood is that it can be matched just like blood. I would bank it for your grandchild."



              We have stored and are paying for umbilical cord blood and tissue from 2 babies from 2 different families and are expecting a third at the end of the year. Stemcyte understood that we were storing for our son, a C6-7 Asia A. Do I understand that this will not work as an option for my son when we get to the point of compassionate use, if it were to match?

              I understand from Stemcyte when the second unit was stored, that this blood and tissue could not be made available to others if it were not to be a match for my son? My hope was that in the same manner as organ transplants..., that multiple families with sometimes different organs, might align for umbilical cord blood swaps to make available matched stem cells for those in need. Is this being considered?

              Thank you, Jim!

              Comment


                Once recalled Dr. Young saying years ago that when doing the stem cell implants in China, that the cord blood cells had to come from the US from (I think) Stemcyte. At that time, there were 30,000 possible sets of cells to choose from. But, the cells had to be HLA matched to the recipient by 5 or 6 markers. And, for each recipient, there were only 5-6 sets of cells that matched the recipient out of the 30,000 in the bank. Jim may be able to correct if I am recalling incorrectly.

                Therefore, in my humble opinion, do not be discouraged from storing umbilical cord blood cells. Those individual cells you have stored may not be fitting for your son, but may possibly be use on another person based on the HLA matching. Maybe one day my C-6 son, 13 years post injury, will be the lucky recipient of your gift of cells.

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                  Originally posted by 6 Shooter View Post
                  Once recalled Dr. Young saying years ago that when doing the stem cell implants in China, that the cord blood cells had to come from the US from (I think) Stemcyte. At that time, there were 30,000 possible sets of cells to choose from. But, the cells had to be HLA matched to the recipient by 5 or 6 markers. And, for each recipient, there were only 5-6 sets of cells that matched the recipient out of the 30,000 in the bank. Jim may be able to correct if I am recalling incorrectly

                  Therefore, in my humble opinion, do not be discouraged from storing umbilical cord blood cells. Those individual cells you have stored may not be fitting for your son, but may possibly be use on another person based on the HLA matching. Maybe one day my C-6 son, 13 years post injury, will be the lucky recipient of your gift of cells.

                  This is one of the smartest, altruistic, forward thinking posts I've ever read here!

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                    vlog

                    Originally posted by Jim View Post
                    Thanks for the report, Parth.

                    If I recall, some are able to make it to Kunming Level IV?

                    Are there any plans to do Vlogs of the individuals as they are walking during the upcoming study?


                    It is obvious that someone overlooked that very critical piece in the prior work done in China hopefully the mistake won't be repeated again.





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                      Originally posted by spayne View Post
                      Are there any plans to do Vlogs of the individuals as they are walking during the upcoming study?


                      It is obvious that someone overlooked that very critical piece in the prior work done in China hopefully the mistake won't be repeated again.





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                      I can never get an answer to this, but it's what I stay askin
                      "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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                        Originally posted by lunasicc42 View Post
                        I can never get an answer to this, but it's what I stay askin

                        It's not like I am asking for that type of info now... I am just asking: "when do we get it?"
                        "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


                          [QUOTE=The mom;1880708]
                          Originally posted by Jim View Post
                          Hey Doug,

                          "The chances are, the cord blood won't be useful for your grand child's parents, or you. The great thing about umbilical cord blood is that it can be matched just like blood. I would bank it for your grandchild."

                          We have stored and are paying for umbilical cord blood and tissue from 2 babies from 2 different families and are expecting a third at the end of the year. Stemcyte understood that we were storing for our son, a C6-7 Asia A. Do I understand that this will not work as an option for my son when we get to the point of compassionate use, if it were to match?

                          I understand from Stemcyte when the second unit was stored, that this blood and tissue could not be made available to others if it were not to be a match for my son? My hope was that in the same manner as organ transplants..., that multiple families with sometimes different organs, might align for umbilical cord blood swaps to make available matched stem cells for those in need. Is this being considered?
                          Thank you, Jim!
                          You should contact StemCyte to find out. If you have cord blood banked with them, I don't see why there would be an issue with swapping for a matching unit.


                          Originally posted by spayne View Post
                          Are there any plans to do Vlogs of the individuals as they are walking during the upcoming study?
                          It is obvious that someone overlooked that very critical piece in the prior work done in China hopefully the mistake won't be repeated again.
                          Overlooked what? You can't report on the progress of a subject taking part in a clinical trial. It is up to the investigators to conduct exams and gather data during the trial. I made the mistake of talking about the subjects during the China trial. I will not make that mistake again.

                          Originally posted by lunasicc42 View Post
                          It's not like I am asking for that type of info now... I am just asking: "when do we get it?"
                          Luna, I don't know if or when the videos of the walkers will be shown. Wise shows them at Open Houses and when he gives talks. We haven't publicized this trial at all. Our focus is on getting it started and doing it right.

                          Comment


                            [QUOTE=Jim;1881102]
                            Originally posted by The mom View Post

                            You should contact StemCyte to find out. If you have cord blood banked with them, I don't see why there would be an issue with swapping for a matching unit.




                            Overlooked what? You can't report on the progress of a subject taking part in a clinical trial. It is up to the investigators to conduct exams and gather data during the trial. I made the mistake of talking about the subjects during the China trial. I will not make that mistake again.



                            Luna, I don't know if or when the videos of the walkers will be shown. Wise shows them at Open Houses and when he gives talks. We haven't publicized this trial at all. Our focus is on getting it started and doing it right.

                            OK I see. I just Totally think that if certain aspects of the successes and potentials of this trial were better known publicly, it would bring more awareness; and therefore more funds, instead of awareness throughout only "our" community
                            "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


                              If the US/India/Taiwan trials have similar results to those in ChinaSCINet trial, then we will have something to publicize.

                              Comment


                                Luna, I don't know if or when the videos of the walkers will be shown. Wise shows them at Open Houses and when he gives talks. We haven't publicized this trial at all. Our focus is on getting it started and doing it right.
                                Are the videos posted somewhere here?
                                Last edited by Jim; 28 Jun 2019, 9:39 PM. Reason: fixed quote

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