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    #46
    @Wise Young - always a pleasure to have you join the discussion! We talked quite a bit with the CEO on our first day here (Monday) about the umbilical cord sources, and were assured that they only use donated cells from healthy, full-term babies, and that the umbilical cord cells, the babies, and the mother all undergo extensive testing for diseases to make sure they're only using healthy cells. They have a very fancy expensive lab here for testing. I don't know the answers to your other questions.

    Thank you for verifying that they do get referrals from the Miami Project. To me that's a stamp of approval from a very reputable organization. Have you heard any other feedback on them from anyone at the Miami Project?

    As far as their patient experiences go - they have told me that pretty much all of their quadriplegic (the group I am most interested in) patients have received some type of benefits from the treatment - what I don't know is how extensive those benefits are, on average.

    @Peterf - All comments are welcome on here, of course, but I just have to say - whether or not it's been "proven" that stem cells can treat SCI, the fact of the matter is, a lot of SCI patients truly have had some successes with stem cell treatments - I communicated with a number of them before we chose to do this. Today we met a guy with a lower level injury who went twice to the XCell Center in Germany, and is now here for his third stem cell treatment - he used to be in a wheelchair, and now he's walking very well with arm crutches. I understand completely that people would try this once out of desperation, maybe even twice if they're really desperate and have a lot of money - but no one is going to do this three times unless they're experiencing legitimate benefits. And a lot of these stem cell clinics do have a lot of repeat customers. As I've said before, either on here or in my brother's blog, I know it doesn't work for everyone, and I know it's not a miracle cure - but I also know that some people really are getting some benefits.

    @All who recommend PT programs - I agree that PT is going to be critical after this, and they stress that hard here (in case it's not clear, we're in Panama now). I used to live in Atlanta, so I know Shephard is fantastic. We're trying right now to figure out how to get what he needs while still staying at home - he's in an outpatient PT program at home right now, and he works out with a personal trainer - and we'd like to ramp up the time he spends on both of those. We have considered going somewhere for an inpatient program, but we're hoping we don't need to - not to be selfish, but after five weeks in Panama, my mom and I are going to want to stay home for awhile!

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      #47
      Originally posted by turbodeezl View Post
      "zero has been proven that stem cells are even safe". ?????????????????????????????????????????????????? ????????????????????????????????????????
      Not sure if you heard but Stem Cell Inc., Geron and Advanced Cell Technology have shown that HESC are safe. ACT has has even shown efficacy.
      "I'm manic as hell-
      But I'm goin' strong-
      Left my meds on the sink again-
      My head will be racing by lunchtime"

      <----Scott Weiland---->

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        #48
        Originally posted by ineedmyelin View Post
        Not sure if you heard but Stem Cell Inc., Geron and Advanced Cell Technology have shown that HESC are safe.
        Where can we look over the safety data reports on these Phase 1 trials? The trials are taking place to prove safety at this present time... THEY HAVE NOT ALREADY BEEN SHOWN TO BE SAFE.
        Last edited by GRAMMY; 11 Feb 2012, 10:47 PM.
        http://spinalcordresearchandadvocacy.wordpress.com/

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          #49
          Miami Group has referred patients there! Have they done a rigorous study of the place or is that just irresponsible?

          I'm interested in the guy who now walks very well with arm crutches after two treatments at XCell. Was he an Asia A injury do you know? I mean if this is true then his recovery is remarkable.

          Comment


            #50
            Originally posted by ineedmyelin View Post
            Not sure if you heard but Stem Cell Inc., Geron and Advanced Cell Technology have shown that HESC are safe. ACT has has even shown efficacy.
            As a matter of fact i was invited by stem cell inc and went to Switzerland for a pre trial test. i know the trial group quite well.
            BTW everything including flights accommodation and meals where paid by stem cell inc. not only for me but for a relative too. they did not charge me a penny for their experiment and signed a protocol which favoured the candidate. This is the way things should be done
            the trial is being done over a period of 4 years on 12 candidates 3 from each ASIA scale and it is only being done to prove safety.
            Geron also was just testing out the safety issue but to my knowledge have discontinued. As to HESC scientifically proven as safe and efficacy through clinical trials this is news to me

            Rahilka as for proof of efficacy is a person going to the now shut down X-cell centre three times you seem to underestimate the power of desperation, and illusion i know of a person who has been 6 times to the neuro vita clinic in Moscow.
            Last edited by peterf; 11 Feb 2012, 6:57 AM.

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              #51
              Originally posted by Christopher Paddon View Post
              Miami Group has referred patients there! Have they done a rigorous study of the place or is that just irresponsible?

              I'm interested in the guy who now walks very well with arm crutches after two treatments at XCell. Was he an Asia A injury do you know? I mean if this is true then his recovery is remarkable.
              @Christopher - I'm not sure about either of your questions. I would love to know more about the thought process of the people at the Miami Project, but I don't have any contacts there - hoping Wise chimes in on this.

              I didn't meet the guy I referred to yesterday - my mom and brother did, and they didn't interrogate him the way I would have Hopefully we run into him again, and I'll ask him more about his pre-treatment status.

              Comment


                #52
                Originally posted by Wise Young View Post
                intheknowstemcells,

                Before you claim that I was incorrect in my response, you should take a look at the date of my post. I posted it in 9/30/2010. It was about one and a half years ago. At the time that I looked at the web site, they were offering only autologous cells (bone marrow and fat cells). Since I work on umbilical cord blood cells, if they had offered such cells, I would have noticed and commented on that.

                I have recently talked to a father of a spinal-injured person who went and visited this group in Panama. It is true that Miami Project has been referring some patients to them. I learned from this father that they are not using HLA-matched umbilical cord blood cells and that the umbilical cord blood cells are obtained locally in Panama rather than a certified cord blood bank.

                Before anybody agrees to the transplants, they should find out what tests were done to rule out infections. For example, people should ask whether they tested the mother for sexually transmitted diseases such as AIDS and syphilis, as well as common viruses such as cytomegalovirus and hepatitis? It is not enough to test the cells. The mother must be tested.

                I wonder what criteria they are using to isolate so-called mesenchymal stem cells from bone marrow and umbilical cord blood? At the time of my last comment in 2010, I pointed out if this group has a GTP facility, this would be better than most of the other places. However, I wonder who gave them this certification. I doubt that they have a US FDA certified GTP facility.

                They will be injecting the cells intravenously or intrathecally, not into the spinal cord. Many animal studies have shown that few or no cells will enter the spinal cord injury site (particularly in chronic spinal cord injury) from intravenous or intrathecal injections. Be skeptical if they are claiming that the cells will get into spinal cord through these two routes of administration.

                Several groups have injected bone marrow cells intrathecally into several hundred patients, for example in Bombay and Cairo. I don't think that the results from these studies have been sufficiently impressive to claim that the treatment has restored significant function in even a small minority of patients. It would be important to ask them to indicate how many of their patients recovered how much motor and sensory function.

                Wise.
                Hello Wise. Thank you for responding and clearing that up. I can only read what they have on the site as of today. I did do some searching about cord blood HLA matching and would like to know your opinion on this: http://www.translational-medicine.com/content/5/1/8

                Thank you.

                Comment


                  #53
                  Originally posted by Christopher Paddon View Post
                  Miami Group has referred patients there! Have they done a rigorous study of the place or is that just irresponsible?
                  The Miami Project and Medistem Panama (aka Stem Cell Institute Panama) announced a collaboration last year. I believe the agreement was for The Miami Project to screen a cohort of SCI patients to undertake a clinical trial using Medistem's technology. The role of the Miami Project was to collect the appropriate clinical data for this 'trial'.

                  btw I personally know an individual who was part of that cohort.

                  I'm not sure what has happened since but the collaboration was abandoned halfway through and the data has not been published.

                  I did ask Dr Dalton Dietrich (Miami Project) about this but he was cagey about the reasons for the collaboration ending.

                  So, in answer to your question Christopher, I think it was intended to perform a rigorous study but unfortunately for some reason it was not completed.

                  That is all I know.
                  Fly Pelican Fly

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                    #54
                    @FlyPelican - very interesting. I would love to know more about that. The reps here did tell me when I visited in June 2011 that they were involved in trials with the Miami Project. This is the first external confirmation I've gotten of that - though it does make me wonder what happened.

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                      #55
                      Rahilka. Has your brother received any injections yet ?
                      www.adventuresofcolinandheather.blogspot.com !

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                        #56
                        Yes, he has. Last week he got one injection via IV, and two into his spinal canal. He has the same schedule for this upcoming week - one more via IV, and two more into his spinal canal. No signs of anything happening yet

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                          #57
                          Hi rahilka. Is your brother getting sick or having any side effects from the stem cells, or is all good in that area? I wish you all the best of luck.
                          Originally posted by rahilka View Post
                          Yes, he has. Last week he got one injection via IV, and two into his spinal canal. He has the same schedule for this upcoming week - one more via IV, and two more into his spinal canal. No signs of anything happening yet
                          Please donate a dollar a day at http://justadollarplease.org.
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                            #58
                            Holy shit people, we all want a chance for some/any return but this is NOT the way. Is it worth removing yourself from all future trials - those that have been proven safe and have undergone peer-reviewed scrutiny?

                            We need a thread devoted to those who have wasted money chasing this.
                            I know at least 2 people that spent $$$ - one to China and the other to Brazil. Know what they got for their money??? NOTHING! About 30k each!

                            Realize that for that kind of money you could go for a glider and an FES bike. Own and utilize those two pieces of equipment and you're better off than 70% of the SCI community.

                            Get your diet right, exercise, weight bear, put yourself in the best position so you can be a great candidate when chronic trials come around. This isn't a sprint people, it's a marathon. A long, uphill, pita marathon.
                            And the truth shall set you free.

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                              #59
                              Well put !
                              www.adventuresofcolinandheather.blogspot.com !

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                                #60
                                i agree with colin83
                                "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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