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  • #16
    Here is your chance to express your opinion and voice for the consumer panel. The North American Spinal Cord Injury Research Consortium (NASCIC) is looking to gather information from the community on issues in SCI research that are important from the consumer perspective.

    https://www.surveymonkey.com/r/SCI2020

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    • #17
      I have just sent the following email to dr. Lyn Jakeman, director of the division of neuroscienze at “The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH)”

      lyn.jakeman@nih.gov




      Dear Dr. Jakeman,

      my name is Paolo Cipolla, I am paraplegic since 2004 due to traumatic spinal cord injury.
      I am writing to you about the upcoming meeting “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research.”
      https://meetings.ninds.nih.gov/Home/Agenda/21041


      I have seen on social media an open letter written by Corinne Jeanmaire (attached below) and I would like to let you know that I fully agree with the considerations explained in the letter.

      Personally I have the impression that in the past there was a much stronger effort to find a cure for people living with spinal cord injury than I can see today where it seems that research has shifted more toward compensative strategies such as brain computer interface etc.

      You may remember the Christopher Reeve Superbowl commercial (Jan 2000)
      https://youtu.be/c1zE5f_A5sY


      It seems to me that so many years later the agenda of the NIH meeting should be mostly about how to finally find a cure for people living with spinal cord injury i.e. CHRONIC SCI, while I see the agenda is mostly focusing on potential therapies that may work just for acute SCI.

      I know that doing lab research on chronic SCI is a bit more complicated than acute, but then when it is time to move to clinical trials in acute SCI there are so many obstacles that is much more likely the potential therapy will “crush” in the “valley of death” than it is with a chronic SCI clinical trial.

      Here is a 2017 study that gives an idea of how difficult can be to do clinical trials on acute SCI:
      https://www.ncbi.nlm.nih.gov/m/pubmed/27627704/


      Why all this focus on acute SCI?
      Is the scar tissue really an impossible barrier to deal with so that there is hope for effective therapies just for acute SCI?


      Finally, over the years, many researchers have explained to me that to restore most neurological functions in people with SCI it is necessary to regenerate the nerve fibers in the chronically damaged spinal cord while therapies that only induce plasticity together with the best possible rehab approach may restore only limited functions in a very small part of the whole patient population.
      Therefore it seems to me that common sense would suggest that, as a strategic way forward, the main focus of SCI research for the future should be to find therapies that can regenerate nerve fibers in the chronically injured spinal cord (also keeping in mind the much easier path to complete clinical trials in chronic SCI).


      Given all the above considerations I wonder if it would be possible to adjust the agenda of the meeting to include more regenerative research applicable at the chronic stage of SCI also inviting researchers that are willing to work in this direction so that they can hopefully launch a powerful effort to find a biological cure for chronic SCI.

      Unfortunately it is unlikely that I will be able to attend the meeting, but I intend to follow the meeting in live streaming and provide more inputs in the future.

      I will share this email on social media and public forums.

      Thank you for you king attention.

      Kind regards,

      Paolo Cipolla - Chronic spinal cord injury must become curable!







      Open letter written by Corinne Jeanmaire – December 4th, 2018

      https://endparalysis.org/nih-disruption-in-cure-spinal-cord-injury-research/


      NIH Disruption in cure spinal cord injury

      Subject: Launching a Decade for Disruption in Spinal Cord Injury Research

      NIH Disruption in cure spinal cord injury
      Dear Dr. Jakeman,

      I am extremely happy to learn of the NIH initiative to organize a meeting entitled “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research.”

      As a paraplegic (since 2001), I am actively involved in various international projects to promote research into SCI recovery. Although I truly welcome the recognition for the need for Disruption, after reading the draft agenda, substantial doubts have plagued me.

      ACUTE injuries first on the Agenda? For us and with us?
      On the research agenda, the first day is solely dedicated to Acute and Sub-acute spinal cord injury. Even though the day includes a session whereby the SCI community will express their priorities, my opinion is that the prominent place given to Acute Research already sends a message. It neglects the fact that:


      – All 2.5–3 million people affected by SCI worldwide are actually chronic. Unlike the complex and small Acute SCI population, Chronic SCI represents the only potentially attractive market for the Biotech Industry, as well as a multi-billion USD Healthcare/Welfare public saving opportunity

      NIH Disruption in cure spinal cord injury

      – Research on Acute Injury is less likely to lead to conclusive clinical trials and thus to actual therapies coming to market. As shown in a 2012 study, both high spontaneous recovery rate and complexity of enrolling patients after just hours after injury makes it scientifically very difficult (and quite questionable ethically!) to test a therapy at that early stage.



      CHRONIC SCI – E-stim and robotics: is this the best we can do?
      The second-day Agenda implies that the 10-year-Disruption prospects for Chronic SCI are limited to, respectively, compensatory measures potentially improving quality of life and small functional improvement for a very small number of patients through robotics and E-stim.



      Admittedly, E-stim has recently shown to enable a limited but so far unseen level of functional improvement for very few patients with incomplete injuries. For complete injuries, it has sometimes led to tiny but unexpected results.

      Any progress is progress, but is this the breakthrough we are waiting for? Do we want to settle for that? Clearly, e-stim alone will never give the patients the kind of recovery they need, even though it will probably be part of the puzzle.

      NIH Disruption in cure spinal cord injury
      What about… Disruption into recovery rather than just continuing to make our paralysis more bearable?
      We know that recovery from a Chronic SCI is likely to come in various gradual steps and will require combinations of various approaches. Surely then there is a need to seek answers/solutions for actual regeneration and/or bridging the chronically-lesioned cord?

      Would it not be feasible and productive to discuss the facilitation of an environment; an eco-system and/or the setup of a flexible roadmap that will ease the development and testing of cutting-edge combination therapies (E-stim will probably be one of them) to gradually or partially bringing back various core functions to SCI patients?

      NIH Disruption in cure spinal cord injury
      I do not presume to have the answers; only these questions which are intended to be as constructive as possible.

      As a European Citizen, I do welcome the tremendous role and support from the NIH with respect to SCI research. Spinal Cord Injury is a global condition and since the Draft Agenda is openly available on the internet, I have taken the liberty to raise these questions, and, hopefully, open the path to constructive discussion(s).



      Thanking you for your attention and looking forward to your feedback.





      With best regards.



      Corinne Jeanmaire – SCI T10 since 2001

      Inviato da iPhone
      Last edited by paolocipolla; 12-17-2018, 09:04 PM.
      In God we trust; all others bring data. - Edwards Deming

      Comment


      • #18
        Originally posted by Skipow View Post
        Here is your chance to express your opinion and voice for the consumer panel. The North American Spinal Cord Injury Research Consortium (NASCIC) is looking to gather information from the community on issues in SCI research that are important from the consumer perspective.

        https://www.surveymonkey.com/r/SCI2020
        In my opinion it is a confusing survey. For sure it didn’t allow me to express my perspective on SCI research, therefore I decided to write my personal email.

        Hope many people will send their own email or simply express support to Corinne’s email.

        Paolo
        In God we trust; all others bring data. - Edwards Deming

        Comment


        • #19
          I thought collaboration was last decade’s goal??????

          Comment


          • #20
            Originally posted by SCI-Nurse View Post
            This conference will not be addressing only Cure research, but that will be included. It is open to anyone with an interest in SCI-related research.


            Meeting Date(s):

            Tuesday, February 12, 2019 to Wednesday, February 13, 2019 Location:

            Natcher Conference Center, NIH Campus
            Bethesda, Maryland
            United States Registration Date(s):

            Monday, September 3, 2018 to Monday, February 4, 2019 Sponsored by:

            • National Institute of Neurological Disorders and Stroke (NINDS)
            • National Center for Medical Rehabilitation Research (NICHD/NCMRR)




            https://meetings.ninds.nih.gov/Home/Index/21041

            (KLD)


            Originally posted by Skipow View Post
            Here is your chance to express your opinion and voice for the consumer panel. The North American Spinal Cord Injury Research Consortium (NASCIC) is looking to gather information from the community on issues in SCI research that are important from the consumer perspective.

            https://www.surveymonkey.com/r/SCI2020

            I'll also post the live feed link for those that can watch the meetings and the NIH Library Archive link for those that cannot attend the meeting in person or watch it live.
            Last edited by GRAMMY; 12-26-2018, 02:56 AM.
            http://spinalcordresearchandadvocacy.wordpress.com/

            Comment


            • #21
              Originally posted by GRAMMY View Post
              During January, I'll be posting a 4 part series at the Spinal Cord Injury Research and Science Report site in preparation of the SCI2020 meeting.
              I'll also post the live feed link for those that can watch the meetings and the NIH Library Archive link for those that cannot attend the meeting in person or watch it live.

              Thanks, will be Watching
              "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


              • #22
                Anybody is going to attend the meeting?

                Paolo
                In God we trust; all others bring data. - Edwards Deming

                Comment


                • #23
                  You can watch the conference this Tuesday and Wednesday here! https://videocast.nih.gov/summary.asp?live=30194&bhcp=1

                  And, yes, I will be attending! Much of the North American Spinal Cord Injury Consortium leadership will be in attendance and presenting Tuesday afternoon on consumer involvement in research and a few other important issues that we were asked to address and that we feel affect our community from the perspective of people living with this injury. Tune in to watch and hopefully it will trigger meaningful discussion and impact on the research during and after the meeting.

                  Comment


                  • #24
                    Originally posted by Skipow View Post
                    You can watch the conference this Tuesday and Wednesday here! https://videocast.nih.gov/summary.asp?live=30194&bhcp=1

                    And, yes, I will be attending! Much of the North American Spinal Cord Injury Consortium leadership will be in attendance and presenting Tuesday afternoon on consumer involvement in research and a few other important issues that we were asked to address and that we feel affect our community from the perspective of people living with this injury. Tune in to watch and hopefully it will trigger meaningful discussion and impact on the research during and after the meeting.

                    Thanks brodie
                    "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


                    • #25
                      Drs. Patricia Morton and Victoria Abraira will be attending on behalf of the Spinal Cord Injury Project at Rutgers- https://keck.rutgers.edu/

                      Comment


                      • #26
                        Here you can watch the archived conference.

                        Day 1: https://videocast.nih.gov/Summary.asp?File=27326&bhcp=1
                        Day 2: https://videocast.nih.gov/summary.asp?Live=30198&bhcp=1

                        Comment


                        • #27
                          Originally posted by corinne jeanmaire View Post
                          dear all,
                          today i sent an open letter to dr. Jakeman from the nih to express my serious worries regarding the agenda of the upcoming conference: "sci 2010 - launching a decade for disruption in sci research".
                          Three chapters in the letter:
                          - acute injuries first on the agenda? For us and with us?
                          - chronic sci ? E-stim and robotics: Is this the best we can do?
                          - what about... Disruption into recovery rather than just continuing to make our paralysis more bearable?

                          My feeling is that the sci community shares these worries. Am i right?
                          Meanwhile the open letter was published on the endparalysis foundation website and you can read it here: https://endparalysis.org/nih-disrupt...jury-research/

                          thanks for your comments and sharing.
                          Corinne
                          corinne,
                          there's not a paralyzed person in this world that wouldn't agree with you !
                          Thank you for expressing it so succinctly.

                          Comment


                          • #28
                            Anybody has watched the archived conference?

                            I am told some researchers are disapponted with what came out of it, but I am afraid most researchers are ok with it...

                            Personally I could not find anything "disruptive", is it just me?

                            Paolo
                            In God we trust; all others bring data. - Edwards Deming

                            Comment


                            • #29
                              For anyone who fell asleep trying to watch the conference there has been a summary written:
                              http://www.nrronline.org/article.asp...;aulast=Lemmon
                              (You have to download the article, but its free)

                              Comment


                              • #30
                                Originally posted by niallel View Post
                                For anyone who fell asleep trying to watch the conference there has been a summary written:
                                http://www.nrronline.org/article.asp...;aulast=Lemmon
                                (You have to download the article, but its free)
                                This was the best summary written so far. Vance was spot on with many important observations that had been entirely overlooked. Good job.
                                http://spinalcordresearchandadvocacy.wordpress.com/

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