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    Wise Young, Grammy

    Please update if anything to share from your side.
    Leif Havton was doing lumbosacral work. Is he at research stage yet or didn?t succeed? When Jerry Silver starting trial which hopefully can be effective in bladder bowel sexual recovery?
    Epidural Stimulation looks good for BBS function recovery so which stage that therapy is?

    Wise Young?s lumbosacral research work looks not speedy enough.

    #2
    Jawaid, I have told you several times that our lab is working on lumbosacral. I can not report on their research.

    Comment


      #3
      i know what you mean, for us getting news is a Totally unpredictable guessing game, it wouldn't be so bad if there were actual dates stated about when news regarding clinical updates about when endpoints will be shared but we don't get that; we get kind of a "it will happen when it happens" non answer
      "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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        #4
        Originally posted by lunasicc42 View Post
        i know what you mean, for us getting news is a Totally unpredictable guessing game, it wouldn't be so bad if there were actual dates stated about when news regarding clinical updates about when endpoints will be shared but we don't get that; we get kind of a "it will happen when it happens" non answer
        Agreed with you
        Frustration kills now

        Comment


          #5
          Originally posted by Jawaid View Post
          Agreed with you
          Frustration kills now
          to be fair I also think we get that kind of non-answer from the researchers and clinicians is because honestly they don't know either, they're going through this process for the very first time. This hasn't already been done before so there is no timeline to compare it with
          "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


            #6
            No news from Jerry Silver?
            I guess he is starting this year or not?
            Nogo will hopefully start trial this year

            Comment


              #7
              Originally posted by Jawaid View Post
              Please update if anything to share from your side.
              Seriously?

              Research and Science experiments taking place in the SCI labs are being updated as pertinent information is made available. You can follow along by signing up your email address. The automatic update will be sent to you each time there is a post at WordPress. You can use the follow button at the other options for updates also.

              WordPress: https://spinalcordresearchandadvocacy.wordpress.com/
              Facebook: https://www.facebook.com/SpinalCordResearchandAdvocacy/
              Twitter: https://twitter.com/ChristalPowell
              Medium: @ChristalPowell


              Promising lab experiments that have progressed with funding into human trials can be applied for (if you qualify). These trial charts are constantly being updated for you.

              Unite 2 Fight Paralysis Curated:

              https://www.u2fp.org/educate/clinical-trials/


              Currently there are 896 general spinal cord injury trials listed. Many related trials to SCI are also available.
              clinical trials.gov.

              SCOPE LISTED: Rehabilitation and Technological trials:
              http://scope-sci.org/wp-content/uplo...2018.03.05.pdf

              SCOPE LISTED: Drug, Cell and Surgical Interventions to Improve Neurological and Related Functional Outcomes:
              http://scope-sci.org/wp-content/uplo...2018.03.05.pdf

              There are also numerous places all over the internet where you can sign up for organizational newsletters or podcasts that will keep you updated several times a month. To name just a few...

              U2FP Newsletter: https://www.z2systems.com/np/clients/u2fp/account.jsp

              SCI Curecast: https://www.u2fp.org/sci-curecast/

              Endparalysis Annual Update: https://endparalysis.org/cure-spinal...-54ae2d1d-7231
              Last edited by GRAMMY; 28 Mar 2018, 5:17 PM.
              http://spinalcordresearchandadvocacy.wordpress.com/

              Comment


                #8
                Originally posted by Jawaid View Post
                No news from Jerry Silver?
                I guess he is starting this year or not?
                Nogo will hopefully start trial this year
                Dr. Silver flew to Miami to give the community an update at W2W and it was posted a couple months ago. Here's what he gave... https://spinalcordresearchandadvocac...l-cord-injury/

                The ReNetX project information has been posted also. I believe for now, they're still raising Series A funding for the trial and building a scientific advisory board. https://spinalcordresearchandadvocac....com/?s=ReNetX

                Originally posted by lunasicc42 View Post
                i know what you mean, for us getting news is a Totally unpredictable guessing game, it wouldn't be so bad if there were actual dates stated about when news regarding clinical updates about when endpoints will be shared but we don't get that; we get kind of a "it will happen when it happens" non answer
                Nobody can predict exact dates when trials will actually start recruiting. When it's announced we will all know. It will be posted on the SCI Report when the company is prepared to make an announcement with everything having been put into place. One must raise lots of money to fund a trial before it can start. Publishing in journals, fundraising and working through the FDA processes and approvals make exact prediction dates impossible. With so many variables and groups involved, proposed dates are only a wild guess. No amount of complaining will change those given variables that are out of someones control. Each and every trial will always have a different set of circumstances. I've surely seen the processes being explained once or twice on the forum to brand new readers so they don't misunderstand the procedures involved and become calendar victims.

                Originally posted by Jawaid View Post
                Epidural Stimulation looks good for BBS function recovery so which stage that therapy is?
                I've told you several times. There is no stimulation therapy available with the exception of Dr. Justin Brown in Boston if one qualifies. Many labs are currently involved in various stages of research and human experiments. There are many ongoing clinical trials that hopefully will result in a therapy or designated SCI device. I've posted frequently in the threads if you look down through the listings in the cure forum. Here's the most recent posts from a month ago concerning BBS function. https://www.carecure.net/forum/showt...exual-Function

                The various epidural stimulation clinical trials (human testing) links are listed in the post above this one. You can look through them yourself. There's far too many to cut and paste here to review one by one. Many future trials will include bowel, bladder and sexual function in the AIMS. There's maybe some listed you didn't know about.
                Last edited by GRAMMY; 30 Mar 2018, 12:29 AM. Reason: added correct city for Dr. Brown
                http://spinalcordresearchandadvocacy.wordpress.com/

                Comment


                  #9
                  Originally posted by lunasicc42 View Post
                  to be fair i also think we get that kind of non-answer from the researchers and clinicians is because honestly they don't know either, they're going through this process for the very first time. This hasn't already been done before so there is no timeline to compare it with
                  fyi, jim is one of the nicest guys ut there, but as far as reporting on sci cure therapies going on please press him to reveal the non-existing;; otherwise, don't hold your breath; it ain't happening dude.
                  In june '02 when i came to cc there was much excitement in "cure" corner; this forum was abuzz, albeit not a single trial going on in the us. Cr was drawing crowds and instilling hope so much so that even i traveled to china on my own dime along with many others which helped kick-start the whole china-net collaboration thing. That said, with all the vision of rasputin i can promise you that chronics won't substantially recover....ever.....(until u-chips electronically minimally benefit us) .
                  Only acutes will someday get the benefit of medical science, acute; as in when first aid from first-responders is applied to prevent self destruction of neurons, etc.
                  Gradually, thru attrition will chronic sci disappear.
                  Mark my words.

                  Comment


                    #10
                    Tim, you are out of the loop. We have a clinical trial starting later this year.

                    Comment


                      #11
                      Originally posted by GRAMMY View Post
                      I've told you several times. There is no stimulation therapy available with the exception of Dr. Justin Brown in San Diego if one qualifies.
                      My understanding is that Justin Brown has left UC San Diego and is now at Washington University of St. Louis.

                      (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


                        #12
                        Originally posted by SCI-Nurse View Post
                        My understanding is that Justin Brown has left UC San Diego and is now at Washington University of St. Louis.

                        (KLD)
                        Thank you for the update on Dr. Brown. He's with a good team then at Washington University of St. Louis!
                        http://spinalcordresearchandadvocacy.wordpress.com/

                        Comment


                          #13
                          [QUOTE=Jim;1852836]Tim, you are out of the loop. We have a clinical trial starting later this year.[/QUOTE

                          Jim,
                          Clinical trial of significance?
                          I'm sure there's many many mini trials going on for maint & care.
                          "Hope can be a dangerous thing"

                          Comment


                            #14
                            You need to come visit us.

                            We are repeating the trial this year in the US that was done in our clinical trial networks in Hong Kong and China. The participants (28) had complete injuries, time after injury was 2 - 17 years. Here's the published paper that summarizes the findings- http://www.ingentaconnect.com/search...ize=10&index=7

                            Comment


                              #15
                              Originally posted by Tim C. View Post
                              I'm sure there's many many mini trials going on for maint & care.
                              In fact ... I find the opposite. There is absolutely no research done on womens healthcare, specific to the rate of endometriosis and paralysis, as well as menopause and its problems.

                              Pressure sore prevention and why some are more prone than others ... aging and its own problems. Depression after three decades of paralysis (looked it up last night and the last study was done in 2007 - 11years ago!) I could go on. It would be nice to find a way to avoid osteoporosis and bone density loss.

                              I never thought my entire life would be wasted in the chair .. but it has. Stands to reason I'll die in this thing. Not fun. I didn't wait around ... I tried. We were just born too early I guess.

                              Hopefully the young ones see something and acute excells to the point where no one has to spend decades paralyzed like we have.
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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