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Spinal Cord Injury Network USA (SCINetUSA)

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      Thanks for finding it.
      The next update will be at our Summer Open House. I will post a message here with a link to register, here are details-
      Triple Header Summer Open House, Thursday, July 15th, 7-9pm!
      A program you don't want to miss!
      For the first time ever, courtesy of Zoom, you can attend our special Summer Open House from anywhere in the world!

      Three featured speakers:
      • Dr. Jason Carmel will present "Restoring arm and hand function with electrical stimulation."
      • John McNeill and Adria De Simone will speak about "Exploiting Benefits and Resources to Advance Employment & Education Opportunities for People with Spinal Cord Injuries."
      • Dr. Wise Young will share the latest news in a "Clinical Trial Update."
      In addition, students from the Summer Research Program will talk about their summer research projects.

      Plan to participate in this exciting program, Thursday, July 15th, 7-9pm. Register here- https://rutgers.zoom.us/meeting/regi...ABDHYaq2u9qSLQ

      If you are unable to attend, will be recorded.
      Last edited by Jim; 12 Jul 2021, 4:47 PM.

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        Open House this Thursday looking forward to it

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          Yes, be sure you have registered so you will get the Zoom link in your e-mail prior to the Open House. (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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            Register here- https://rutgers.zoom.us/meeting/regi...ABDHYaq2u9qSLQ

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              Originally posted by Sparky831 View Post
              Open House this Thursday looking forward to it
              Anything to note? Anything new from Wise?

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                Originally posted by Barrington314mx View Post

                Anything to note? Anything new from Wise?
                Nothing really new really. I guess the only new thing is the updated start of the trial.

                They plan on starting the trial late this year or early next year. They will submit the Pre-IND proposal next month.

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                  Is it only me but these trails seem to be taking ages to set up. If you look back over all the posts about clinical trials on there you will read things is slow when doing clinical trials and hard to set up . But the one that really gets me MAD is where I read about trails are to start at the end of the year Or early next year . If not then it the fall or in the spring. It depends what country you’re in and reading this . until I see video posts of ones actually walking I’m getting sensation and movement back I won’t believe it . On the positive side I am glad that somebody is trying to do something for us it’s just a pity it’s taken so long . Well it is for me 15 years I know there is ones here that are a lot longer in a chair
                  ps
                  I do hope trials will start early next year if not then in the fall ? And the year just keeps rolling into another one
                  AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


                  http://justadollarplease.org

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                    Unfortunately setting up clinical trials is not easy. Every country has it's own regulations which only adds to the confusion. Howcever, that beingsid, it does seem to take a very longtime. I am not sure what else to say .... COVID certainly has not helped this at all.
                    ckf
                    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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                      With all due respect covid has been a good excuse for the last 15 or so months. But the talk of these trials has been going on for probably a decade I don't like to be a pessimist but at this point these look more like fundraising campaigns then realistic goals.

                      Or at least goals where they are not cemented in and the goal posts can be moved back at will month to month / year to year.

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                        Originally posted by Mitchitsu View Post
                        With all due respect covid has been a good excuse for the last 15 or so months. But the talk of these trials has been going on for probably a decade I don't like to be a pessimist but at this point these look more like fundraising campaigns then realistic goals.

                        Or at least goals where they are not cemented in and the goal posts can be moved back at will month to month / year to year.

                        Mitchitsu,

                        Have you been to an Open Houses at the Keck Center and met Wise and Patricia, or more recently, attended our virtual Open Houses?

                        Have you ever emailed Wise and asked why the trials are taking so much time to begin?

                        Have you ever sent me a private message asking why it is taking so long?

                        Why wouldn't Wise want to get this trial done a soon as possible? Would delays increase funding?


                        Questions should come before accusations.






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                          Jim - no I have not attended myself personally. However I have had family members attend for me since it is difficult for me to get there.

                          I have spoken to Dr Wise on the phone as well as Patricia who is a very nice person. In fact Dr Wise Young has seen videos of me ambulating and commented on them. So yes there has been communication

                          I have family members who have spoken to Dr Wise on my behalf on many occasions for me as well.

                          So yes I am maybe not so much directly but indirectly very familiar with things happening.

                          However I did not say the delays were intentional by Dr Wise Young. But let's call a spade a spade, this very thread was started in 2009. That alone should have people asking more questions.

                          In the interest in being open and honest, this was written by Dr Wise Young in 2009 long before he 'abandoned' this website. So please excuse people's pessimism

                          """The phase 3 trial (US103) will not be at least until Q3 of 2010, a year away. We still have many hurdles in front of us, not the least of which are FDA approval of and successful completion of phase II trials that show that the umbilical cord blood cell transplants are safe and show some promise, not to mention fundraising."""
                          Last edited by Mitchitsu; 21 Jul 2021, 11:33 PM.

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                            If you had attended the monthly Open Houses on Zoom the past year you would know exactly why the trial has been delayed for so long because Wise goes over the timeline and the roadblocks.

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