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  • Tay Sachs

    A dear friend of mine wants recent information on the use of Stem cells for Tay-Sachs disease. Whoever has any research or studies about it. especially in Florida???!!!!

    Can anybody help please?

  • #2
    Here is some information on both gene therapy and stem cell transplantation in Tay-Sachs:

    http://www.tay-sachs.org/research.php

    http://www.tsgtconsortium.com/

    You can also do a search with the term "Tay-Sachs" at www.clinicaltrials.gov for studies in the USA.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      Thank you so much for your input. But My friend needs specific information about Stem Cells in Tay Sachs because there is a doctor here in Florida claiming that he can cure it with stem cells? We are suspicious!!!!

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      • #4
        If that were the case, the Tay-Sachs organization above would be all over it. Since that is not the case, I have to assume that it is a scam or illegitimate therapy, similar to those making similar bogus claims for SCI/D.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          This is the information of this mysterious center??!!!!
          Attached Files

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          • #6
            it seems this guy has found the cure for every disease including SCI

            http://stemcellgeneticmed.com/stemcelltreatments/

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            • #7
              Does anybody know about this guy????!!!!

              He seems able to cure all diseases with stem cells, right here in Florida!!!!!!

              http://stemcellgeneticmed.com/doctor-profile/

              website:

              http://stemcellgeneticmed.com/stemcelltreatments/

              The Doctor:
              https://www.healthgrades.com/physici...einerman-38x48
              Last edited by drnader; 05-30-2017, 07:15 PM.

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              • #8
                Originally posted by drnader View Post
                He seems able to cure all diseases with stem cells, right here in Florida!!!!!!

                http://stemcellgeneticmed.com/doctor-profile/

                website:

                http://stemcellgeneticmed.com/stemcelltreatments/

                The Doctor:
                https://www.healthgrades.com/physici...einerman-38x48

                Scam...I am reminded of a similar conversation and have all of the same thoughts that I posted there...not exactly the same but the same thinking still applies

                http:///forum/showthread.php?259410-...ical-practices
                "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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                • #9
                  I am being IRONIC, he is a scam... but why isn't he stopped by the authorities???!!!

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                  • #10
                    Has anyone here ever heard of him??

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                    • #11
                      Originally posted by drnader View Post
                      I am being IRONIC, he is a scam... but why isn't he stopped by the authorities???!!!
                      In the UK or Europe, everything is strictly regulated, and if a company makes a claim that isn't support, if there is poor efficacy, or medical procedures are carried out without state regulation, you would be shut down and thrown in prison.

                      It absolutely amazes me that it happens in the US; I thought companies LEFT the US to go to places like Panama, Costa Rica, or any other obscure South American country where there is little regulation.

                      I'm guessing regulations vary state to state?

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                      • #12
                        sorry that I misread the sarcasm ...but ummm yeah
                        "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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                        • #13
                          Originally posted by taymas View Post
                          In the UK or Europe, everything is strictly regulated, and if a company makes a claim that isn't support, if there is poor efficacy, or medical procedures are carried out without state regulation, you would be shut down and thrown in prison.

                          It absolutely amazes me that it happens in the US; I thought companies LEFT the US to go to places like Panama, Costa Rica, or any other obscure South American country where there is little regulation.

                          I'm guessing regulations vary state to state?
                          I doubt it is done in the US

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                          • #14
                            Yes, most of these company's just have a mail drop or maybe a business office in the USA, but do their actual procedure off-shore. We have had several of these businesses in the San Diego area, which actually do their procedures in Mexico. One was fairly spectacularly raided by the FDA several years ago. Here is a sting done by 60 Minutes several years ago in Florida: https://www.youtube.com/watch?v=ovPZkQYee8Y

                            I think unless there are complaints to the FDA or FBI from people fleeced by these companies, they are not really on their radar for enforcement of false claims. Notice also in the ad above, they don't claim in their ad to "cure" SCI, but only to "treat" it.
                            https://www.statnews.com/2016/02/08/...-cell-clinics/

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment

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