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  • Originally posted by ineedmyelin View Post
    Darn, sounds like Brackenridge in Austin, Tx is no longer a trial site.
    I think that if the publications and initial results are good, lots of places that do SCI research and treatment will be clamoring to participate. They won't want to miss out on the future treatments and related profits.

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    • All I need to know is how to become part of it when it does happen ? Thats the million $ question

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      • Originally posted by allenstevens View Post
        All I need to know is how to become part of it when it does happen ? Thats the million $ question
        One way is to go here: https://clinicaltrials.gov/ and look for the recruiting instructions. For example, search for SCI and look for "Recruiting".

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        • been there a hundred times, have you ?????? everyone or thing or whatever it may be on there is impossible to get ahold of. 95 % of them havent been updated in a couple years, give it a shot see where it takes ya

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          • ineedmyelin: The doctor initially involved with stem cell SCI research at Brackenridge has re-located and practices in another state. I wish that TIRR and this foundation would take an interest: http://www.memorialhermann.org/found...-ogilvie-fund/

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            • Originally posted by 2drwhofans View Post
              ineedmyelin: The doctor initially involved with stem cell SCI research at Brackenridge has re-located and practices in another state. I wish that TIRR and this foundation would take an interest: http://www.memorialhermann.org/found...-ogilvie-fund/
              Thanks 2drwhofans. I guess here in Texas were left hoping this treatment is successful, if it is i'll travel almost anywhere to get the procedure. Good luck to all of us.
              "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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              • I guess my question is when? Are any of these treatments close to being available? I see everyone's frustration with the trial site, and yes it does not seem to get updated regularly, however I have been contacted several times when I contact the direct contact listed on some of these trials maybe try that. It would be nice if they updated the results anyway so we all knew what was or wasn't promising anymore.

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                • Dr. Wise, is there anyway we as spinal cord patients could help in contacting government officials to get the "compassionate use approval"? I too would like to thank you for devotion, please know your hard work does not go unnoticed and is much appreciated. I too think a bit like Doreen, China just seems to have so much more experience than the states with spinal cord injuries. How would any of us know when and if it is passed for availability? If it is not passed for here what about in China? Would hospitals be willing to take overseas patients and do the procedure there even if it is not passed here?Again thank you for your time just curious as I would not want to limit myself to waiting for something that could be readily available else where.

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                  • Could somebody please explain to me what locomotor vs. motor and sensor scores mean?

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                    • Originally posted by ikamyar View Post
                      Could somebody please explain to me what locomotor vs. motor and sensor scores mean?
                      Basically locomotor is walking and stepping and voluntary movement

                      Sensory is feeling
                      "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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                      • jferg, send me your email and I will put you on my clinical trial eBulletin notification list- jimbenn@rutgers.edu

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                        • James, your first two sentences tell me you have some writing talent, you should use that. But what I mainly want to remind you of is that there are dozens of labs around the world working on therapies, from many different directions. Who knows when someone will announce something. Look at the epidural stimulation announcement a couple of months ago. There are things going on you never read about. Surely FDA approval and technique development would be much faster for some of these. Meanwhile, you have Wise's trials showing regenerating white matter down the spine. The importance of that can't be overstated. My son is in much your same situation. I understand a bit about how you feel but I doubt I could ever quite feel the depth of frustration without being a quad myself. Still...hang in there.

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                          • http://news.163.com/14/0615/09/9UP5A88400014AEE.htmlYou can move your hands by this system.

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                            • Originally posted by dukevanwillem View Post
                              James, your first two sentences tell me you have some writing talent, you should use that. But what I mainly want to remind you of is that there are dozens of labs around the world working on therapies, from many different directions. Who knows when someone will announce something. Look at the epidural stimulation announcement a couple of months ago. There are things going on you never read about. Surely FDA approval and technique development would be much faster for some of these. Meanwhile, you have Wise's trials showing regenerating white matter down the spine. The importance of that can't be overstated. My son is in much your same situation. I understand a bit about how you feel but I doubt I could ever quite feel the depth of frustration without being a quad myself. Still...hang in there.
                              Thank you, and yes I can write a bit and being newly paralyzed I read over and over others frustrations of the waiting and I feel their pain and I see so many lost with hopelessness and I too don't want to be one of those people. I believe in the bodies power to heal it's self among other things but also know from my past work history what kind of difficult red tape the government does pose. I also know that our current president of the FDA I would not trust raising a hamster as he is affiliated with Monsanto which is a whole other post in its self. I do feel that maybe we need to be voice, when I got my first letter back from the President of the United States he starts out saying how moving my story was and finishes with how much money he has put towards drugs and cancer research.. I took a deep breath and considered thee audience. I believe we need to start somewhere anywhere and start restoring hope to so many who have lost it. And if there is anything I could personally do then I would like the chance. I would hate to see us treated as mushroom's as I think we are owed that after. I could totally see another country landing the cure and our bureaucracy putting a halt to offering it here for many reasons such as money, and other legalities. I do have a friend who worked in spinal cord research before she became a doctor for many years and she had filled me in the long road these scientist have to travel to even get a head turned let alone funding. We are also a small community compared to many other health ailments and with there being few things to patent and get rich on we lack funds and education.

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                              • http://news.163.com/14/0615/09/9UP5A88400014AEE.html

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