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Something to look into, but be very sceptical...

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  • #31
    StemCyte is the company Dr. Young has been working with to develop this therapy. They have donated all of the cord blood for the trials, and will continue to going forward. Any qualified Dr will be able to apply for Expanded Compassionate Use to deliver the therapy. I don't think there are many Dr's in the US that have injected cells into the spinal cord though.

    The upcoming IIb Trial will consist of 3 groups of 9 subjects. 1st group: Umbilical cord blood (UCB) injections + 6 weeks of oral lithium + intensive PT, 2nd group: UCB injections + Intensive PT, 3rd group: PT only. This trial will be held at 3 hospitals in the NJ/NY. This will also be carried out in India and possibly additional countries.

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    • #32
      Originally posted by niallel View Post
      I'm going to ignore your suggestion that the UK might not care about safety as much as the US, Let me put it as simple as I can what I was suggesting.

      What I am suggesting is that it would be nice if trials that have shown to be safe and to have given something back could be taken by people who have made a decision themselves to have it.

      Two examples:
      1) Wise's trial has shown to be safe and gives benefits.
      2) Harkema's epidural stimulation has shown to be safe and gives benefits.

      Why should we sit in our chairs and suffer for 10 years in hope when there seems to be an alternative.

      If there was a company who did exactly what these 2 have done, I don't care where its located, but if they followed exactly what has been done then I would go tomorrow. Sign whatever legal documents they wanted to cover themselves and get on with it. It should be our choice, just like Dallas Buyers Club.
      Consider these questions:

      1. Would StemCyte (or their shareholders) allow for a "pay-as-you-go" intervention in a deregulated jurisdiction with their cell product?
      2. Where would you find a surgeon that is willing to undertake the implant of device or transplantation of cells in a deregulated jurisdiction?
      3. Would the device manufacturer (or their shareholders) allow for a "pay-as-you-go" intervention in a deregulated jurisdiction with one of their stim products?
      4. Would the device manufacture offer any followup support if there is a fault with it? Should they?
      5. Would the NHS (in the UK) support you if there is any adverse reaction after intervention? Should they?
      6. Would Dr Harkema (or even Edgerton) share/license the "tweaks" to the devices and the trial protocols with a company willing to deliver the intervention in a deregulated jurisdiction?

      Also google NeuralStem and "Right to Try".

      Cheers

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      • #33
        Originally posted by Jim View Post
        Niallel, when our Phase IIb trial is approved by the US FDA, it will be eligible for Expanded Compassionate Use. As soon as the patients are selected for the trial, the therapy will be available, and the cells will be provided by StemCyte at cost.
        Is anywhere going to inject the cells? Or is that up to individual surgeons?

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        • #34
          It's up to surgeons and hospital boards.

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          • #35
            Originally posted by Fly_Pelican_Fly View Post
            Consider these questions:

            1. Would StemCyte (or their shareholders) allow for a "pay-as-you-go" intervention in a deregulated jurisdiction with their cell product?
            2. Where would you find a surgeon that is willing to undertake the implant of device or transplantation of cells in a deregulated jurisdiction?
            3. Would the device manufacturer (or their shareholders) allow for a "pay-as-you-go" intervention in a deregulated jurisdiction with one of their stim products?
            4. Would the device manufacture offer any followup support if there is a fault with it? Should they?
            5. Would the NHS (in the UK) support you if there is any adverse reaction after intervention? Should they?
            6. Would Dr Harkema (or even Edgerton) share/license the "tweaks" to the devices and the trial protocols with a company willing to deliver the intervention in a deregulated jurisdiction?

            Also google NeuralStem and "Right to Try".

            Cheers
            This thread started out about a Thorn Medical who are regulated in the Bahamas to do it, so that answers 2.
            For 1. I suppose thats up to Thorn Medical to sort out with StemCyte, but they are a company with a product to sell and thats what companies do.
            3 & 4 the same I suppose.
            For 5. I suppose they would offer me the same as they do today - drugs that don't work.
            6. Probably they wouldn't, but why not - they are going to license them at some point.

            Just started reading about the NeuralStem and "Right to Try", sounds like its exactly what I was suggesting.
            Funnily I was in Denver the day Amendment 64 was passed, good on them letting people try what they want :-)

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            • #36
              I am pretty sure things can be accelerated with smart people connected with investors in non-over-regulated environment.
              I am saying - if someone put things together that way - maybe Thorn Medical did that..maybe not.
              Just a notion that small private venture was able to make electric car with 300 miles range
              and big boys after 7 years still chasing that range....
              Things can be done ...we just need our Elon Musk
              www.MiracleofWalk.com

              Miracles are not contrary to nature, but only contrary
              to what we know about nature
              Saint Augustine

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              • #37
                I know this is probably not worth investigating further but has anyone heard of Ken Ware and his story of helping a paraplegic recover ? I could not find any posts on this forum

                https://www.youtube.com/watch?v=arSGwsgaAC0

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                • #38
                  he was also on 60 minutes. His thing is extreme exercise but from what I read from the threads here (there were a few that covered him) he asks for a lot of money but it is interesting

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                  • #39
                    Originally posted by scimike View Post
                    he was also on 60 minutes. His thing is extreme exercise but from what I read from the threads here (there were a few that covered him) he asks for a lot of money but it is interesting
                    thank you for the feedback scimike, I noticed their website only mentions incomplete SCI so I contacted them to inquire whether their therapy could help me, I was diagnosed as incomplete Asia B initially but I have no movement or external sensation below the nipples (T3/T4), I can feel my abs and have some control over them and get a lot of lower back pain, so I behave like a complete chronic with some preserved sensation, they answered that they could help but they want me to provide more information.

                    I am aware of the high costs, I am trying to establish whether this is worth investigating or not, I will probably provide them with the info they are asking for. They provide courses online as well. I will see if I can take the course and try to apply the principles instead of flying out to Australia in case this proves to be something worth considering.

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                    • #40
                      Here is the 60 min video below. It worked for him but I searched and I could not find a similar success from his site.

                      https://www.youtube.com/watch?v=BRqks-EOh2w

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                      • #41
                        Originally posted by scimike View Post
                        Here is the 60 min video below. It worked for him but I searched and I could not find a similar success from his site.

                        https://www.youtube.com/watch?v=BRqks-EOh2w
                        Yes I saw that video, I would think that if this worked for 10% of the patients, it would be all over the news and the Internet. Got a quote from them for 1,000 Australian dollars per hour if I wanted to work with the top guy, need 4 sessions of 2 hours each initially so a total of 8,000 Aus$, this should be followed by 3 weeks of 1 hour sessions, 2 to 3 sessions per week where I would get complimentary access to the gym to practice what I learned.

                        Here is a link to the testimonial of one of their clients

                        https://vimeo.com/174606733

                        This is something one could try because it does not involve any medication or stems, but the problem is the high cost of sessions, plus travel, accommodation, time away from work, etc..

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                        • #42
                          [QUOTE=Yas;1811475]
                          Originally posted by Yas View Post
                          Yes I saw that video, I would think that if this worked for 10% of the patients, it would be all over the news and the Internet. Got a quote from them for 1,000 Australian dollars per hour if I wanted to work with the top guy, need 4 sessions of 2 hours each initially so a total of 8,000 Aus$, this should be followed by 3 weeks of 1 hour sessions, 2 to 3 sessions per week where I would get complimentary access to the gym to practice what I learned.

                          Here is a link to the testimonial of one of their clients

                          https://vimeo.com/174606733

                          This is something one could try because it does not involve any medication or stems, but the problem is the high cost of sessions, plus travel, accommodation, time away from work, etc..
                          Ken Ware's Neurophysics (or ware k tremor)

                          Thank you for the heads up. I've done some more research finding Ken Ware's Neurophysics or 'Ware k tremor' elicits tremors using some exercises like this https://www.youtube.com/watch?v=kUgu7ZIqpag but charges a lot of money for it.

                          http://www.mmdnewswire.com/ware-k-tremor-therapy-chaos-health-116086.html
                          explains the supposed science in detail with the following paragraph standing out:

                          The researcher claims that the exploitation of the Ware K tremor to quickly restore the physical and emotional integrity of patients, is significantly superior to other forms of therapy and that the predictions and results are easier to account for. He adds that Ware K tremor therapy is the ultimate expression of neural plasticity.

                          Ken Ware isn't happy a SCI ex-rugby player Alex McKinnon claimed it didn't work for him in his biography


                          David Bercelli's TRE as a much cheaper alternative

                          There's an alternative 'TRE' (Trauma release exercise) developed by David Bercelli that some SCI people (walking quads) can do themselves for $0. Here's an example. Start it a 9:40:

                          Last edited by Pauly1; 10-17-2016, 03:37 AM.

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                          • #43
                            http://www.redd-monitor.org/2016/11/...tock-exchange/

                            update on ipo

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