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    Third International Spinal Cord Injury Treatment Beijing, News?

    Anyone heard anything?
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
    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.

    #2
    Yes.

    It was amazing. There is so much to be hopeful about. Suzanne Poon has done an amazing thing and the world owes her a collective thank you.

    I swear, I didn't hear "In 5 years time...." Not once.

    Comment


      #3
      Originally posted by World Traveler View Post
      Yes.

      It was amazing. There is so much to be hopeful about. Suzanne Poon has done an amazing thing and the world owes her a collective thank you.

      I swear, I didn't hear "In 5 years time...." Not once.
      what did you hear?
      http://www.facebook.com/ivicamaotze.rod

      Comment


        #4
        I swear, I didn't hear "In 5 years time...." Not once.
        Just that is good news!!
        "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

        Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
        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


          #5
          I definately want to know the scoop on whats going down there also. Is there some research that is going to be put to work soon? Info like that should be posted asap! Im looking forward to hearing whats going on. I have no problems with traveling for progressive treatments, my passports ready to go! Please post as soon as somethings heard!

          Comment


            #6
            I do not have a medical background, so I can only speak in the plainest of terms. The brilliant scientists can do a much better job than I.

            I saw AMAZING techniques for acute injuries. The Olympic Dancer who fell prior to the games had surgery within 2 hours and is now walking with a brace and steadily improving. Seems to have BB control. It was the surgery that made the difference. The speed at which the Chinese were able to get in and perform the surgery seemed to me to be key. (Please remember, I have no medical training so I may and should be corrected.)

            The international community is working so hard to save lives, improve function, the collaboration that is happening between Dr. Young and the doctors overseas is phenomenal. They just won't stop until they conquer this beast. They won't stop.

            For the chronic SCI population, there is so much hope. So much need for funding. Wise Young and Stephen Davies are so dedicated, they are completely aware that it is the chronic population that have been waiting and after talking to both, I could not have been more impressed with either. Dr. Davies research should be supported, in my opinion. I know you have all been following his thread in this forum. He is passionate, brilliant, and is able to put things in a way that a layperson, such as myself, could follow. He is careful not to create false hope. It won't be a pill available on the shelf at the end of the month, but he is tireless in his commitment.

            From what I could understand, the Chinese being quick to surgery and the having people who have had the surgery walk for hours around the hospital is their major contribution. I may have missed A LOT in translation there. But keeping bodies moving is so important and might be responsible for their lack of UTI's etc. during recovery. My first thought was "Great, people are walking, but do they have BB control." The answer appears to be yes. Their walking gait after a year was not quite normal, but it was more than reasonable, going up and down stairs without assistance.

            Someone much more intelligent needs to step in and say that better than I can. The meeting of the minds was wonderful. These researchers care deeply about your life and I left the conference each day unable to sleep because of all of the possibilities.

            I do not have an SCI. I am AB. I wish that I could do or say more. But there is hope. I may have met the people who will change your lives for the better. It was one of the most profound trips of my life.

            The best advice that I could give, is attend these conferences. Show up. Be seen. Ask questions directly. There was only one man in attendance for the conference that was in a chair. Only one. It is not enough to wait when you can learn first hand, see, and make sure that your concerns are heard, and listen hard to the answers. That and find a way to keep your bodies moving. Do not become complacent. Keep moving.

            The Care Cure Community is incredibly well informed. Much more so than your local GP. That knowledge is a huge power. Please use it for all you are worth.

            Again, thank you to Suzanne Poon and Dr. Young. You did an amazing job of pulling the conference together and it was marvelous.

            Comment


              #7
              Thank you so much.
              "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

              Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
              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


                #8
                Thank you World Traveler!

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

                Comment


                  #9
                  I was the ''one in the wheelchair there'' that World Traveler mentions and I echo the sentiment that ''we'' have to get to these events . I was disappointed that there wasn't any other SCIs evident there . In my opinion the major reason [even more important than self education] to attend is to give a visible reminder to researchers and administrators of what their final goal is . It was a great conference both in organisation [my thanks once again to Suzanne Poon (it was good to finally meet you)] and content .

                  After 10 days away from home [it's a long way from outback Australia to Beijing] I have a heap of work needing attention , but I will try to post my impressions of the conference after I get things back to the normal state of organised chaos here .

                  Thank you ,
                  Dogger
                  Every day I wake up is a good one .

                  Comment


                    #10
                    thanks world traveler and dogger, and of course suzanne

                    dogger, am anxious to hear your views on research and beijing
                    http://justadollarplease.org/

                    2010 SCINet Clinical Trial Support Squad Member

                    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

                    Comment


                      #11
                      Dear Dogger and world traveler,

                      I am sorry to say that maybe you forgot mentioning some chinese SCI patients, who attended this conference as well.

                      Anyway i was very happy to see you in conference, although i didnot say hello to you in person.

                      I hope you have enjoyed your stay in beijing.

                      Shishi

                      Comment


                        #12
                        Sorry Shishi

                        Please accept my apologies , tiredness caused a few differences between my mental composition of thoughts and what I wrote . I had meant to mention that there were some Chinese SCIs [along with nurses etc who appeared to be catching what they could between work committments] at the CRRC meeting and one wheelchair user [could have been some ambulatory SCIs as well] who turned up on the last afternoon at the Empark Grand conference .

                        Were you the young lady in the chair who was met in the Empark Grand conference room by Wutian Wu and Suzanne Poon on arrival ? If so , I was hoping to meet you but unfortunately did not get to do so .

                        I had a great time in Beijing and cannot speak highly enough of the friendliness and hospitality displayed by everyone I came in contact with . I stayed in a hotel in Zhongguan Cun and by the time I left had made a number of friends among the locals . Even though we could not actually verbally communicate there was a lot of smiles and laughter from both sides .

                        Once again , please accept my apologies ,
                        Dogger

                        Leo , I have not forgotten your request and will post impressions , opinions , etc in a few days .
                        Every day I wake up is a good one .

                        Comment


                          #13
                          I'll try and give a quick summary of what I took away from the conference .

                          Firstly I was very impressed by the enthusiasm and professionalism displayed by the Chinese in their efforts to meet the SCI challenge . We had a look through one of their SCI facilities at the CRRC [China Rehabilitation & Research Centre] . From what I saw it is a world class SCI centre , though the figures are a bit mind boggling [it handles 500 patients each day and has 600 beds] .

                          Onto the research stuff . There were many varied presentations ranging from 4AP through surgery techniques for very high quads to stem cell applications by speakers from Mainland China , Hong Kong , Taiwan , USA , India , Japan and Korea .

                          To my mind there were 2 outstanding prospects in the pursuit of the ''cure'' ; one each for Acutes and Chronics .

                          I'll start with the acute one . Gong Ju & Hui Zhu from the Chinese 4th Military Hospital gave a presentation on a procedure whereby they make an incision in the covering of the cord basically allowing the debris/inflammation material to escape and decompression 2 -65 days after injury of 30 SCI subjects . Assessment of the subjects was done at 17 days after surgery [when 3 months of rehabilitation began] , and after 1 , 2 and 3 months of rehabilitation . If my memory [and understanding of the translation] is correct , the researchers involved found that doing the surgery between 4 & 17 days after injury produced the best outcomes .

                          The results were impressive , 60% recovered locomotion without assistance . They have now done this to 400 patients . Another amazing result [though anecdotal as it wasn't in assessment criteria] was that the 400 patients currently operated on have not suffered a bowel or bladder infection for the 12 months following surgery . This presentation created a real buzz of excitement among the researchers and others in the room .

                          One US researcher asked the following question which I found interesting , ''This procedure has been tried over the past 80 years without success ; why are you getting these amazing results ?'' The reply was , ''The time frame is the secret , too soon or too late and you are wasting your time .''

                          Now to chronics . The steps forward that Stephen Davies has taken with his Decorin research since I met him in DC last year are amazing . I don't think I need to say much about this as Stephen and others have posted extensively about this on CC [I'm not sure of all details posted because my internet connection has been very troublesome for the past year] . I was very interested to hear that they have discovered there are ''good'' and ''bad'' astrocytes , and their ability to produce the ''good'' astrocytes . I spent quite a bit of time with Stephen and would like to thank him for his patience in answering my questions .

                          By the way , don't discount Wise Young ET Al's Lithium research . I feel confident it will be part of the jigsaw puzzle that is the quest for SCI cure .

                          Now for the downside . Bureaucratic/administrative roadblocks are still a major problem . Gong Ju and Hui Zhu have been trying to get published in scientific magazines [which we all know is a step toward being accepted by the mainstream scientific/medical community and government health bureaucracy] for the past year without success . And Acorda is still beating its head up against the FDA wall with 4AP even though it has been trialled for 25 - 30 years by over 1200 subjects without major adverse effects .

                          In closing , the enthusiasm and energy with which the Chinese are pursuing the SCI holy grail gave me renewed optimism that the jigsaw puzzle is falling into place .

                          Thank you ,
                          Dogger
                          Every day I wake up is a good one .

                          Comment


                            #14
                            Very interesting - thanks so much Dogger.

                            Comment


                              #15
                              That was very interesting Dogger...I wonder if we can get these presentations some where in the net or may be posted in Youtube?

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