No announcement yet.

Live from Working 2 Walk 2010!

  • Filter
  • Time
  • Show
Clear All
new posts

    Did anyone ask about the status of a clinical trial for acutes based on Davies April 2006 paper, "Astrocytes derived from glial-restricted precursors promote spinal cord repair"? This is nearly 5 years old.

    The point being the best paper won't help anyone if it doesn't go to trial. I hope the soon to be released paper will be met with action.


      Schmecky; good call. All the papers in the world won't cure anything until proven in trail.

      keeping on


        Originally posted by carbar View Post
        A very big thanks to all at U2FP for organizing the conference and for bringing in such a great bunch of scientists and rehab specialists. And congrats to all those who managed to haul their butts to Phoenix - no easy task but so well worth it I think.
        I know that the talks were filmed and are planned to be available online sometime soon so anyone who didn't manage to get there will be able to hear the nuts and bolts of where the science is right now. What you won't see though are the smaller group discussions with the scientists which were really great, and the get togethers in the hallways, bar etc. And what really inspired me was to see the likes of Ed Wirth, Stephen Davies, Philip Horner and Frank Reynolds huddled together in a corner in deep discussion, and seeing them attend each others sessions, asking each other questions. These guys are really with us all the way - I think we are lucky to have them. Like Dr Young they are fully committed to pushing the science through all the hoops it has to go through to get to clinical trials, and it's our job to keep supporting them. A good starting point is to get behind U2FP!
        Thanks Barbara for your kind words. It was so good to see you again and I'm happy to hear your thoughts on last week parallel mine.

        It was wonderful to see so many people travel from great distances to attend W2W. England, Ireland, Norway, Hong Kong and Spain were all there, reminding us this is a global issue. Anyone, anywhere, can suffer a SCI. A message each of us should be sharing with the world.

        This conference was extraordinary. My contribution was helping to provide a venue and bring people together who share a common goal. The people attending made it a success. The venue was perfect and I loved the size of the group. This was truly a remarkable group of people who are leading the way to a cure for SCIs. You could feel the passion and dedication in the air.

        So many individuals and their families and friends committed themselves to the physical and financial challenges of attending. I can’t thank them enough for their participation in Working 2 Walk. The sense of community and can do spirit that each person brought is immeasurable.

        Our presenters were great! The research is without a doubt, advancing and I think the SCI community can help increase the pace at which it moves forward. I was excited last year to have an opportunity to put together a panel to talk about the parameters of conducting human clinical trials. This year, we talked about current and proposed clinical trials. We’re moving forward and it’s exciting to turn a very important corner. Our presenters are dedicated and passionate about finding a cure for SCIs and keeping us healthy. They care about this community and deserve our support and respect. It was interesting that a couple of them actually have personal ties to curing paralysis too. Each presenter shared what they could and took the time to listen to us as well.

        And then of course, there were the ADVOCATES!!!! The absolute best group of advocates I have witnessed under one roof! What a great foundation they provide for research to build on. Karen Miner was presented with our first “Kick Ass Advocate” award. I have to share her story for those of you who don’t know it. She’s a mentor for all of us.
        Karen was injured in a car accident nearly 20 years ago, but has never felt sorry for herself and never looked back. Shortly after her injury she began advocating for passage of the Roman Reed Research Act in California, a successful effort that immediately increased awareness of SCIs and created a funding source to accelerate the progress of research. She didn’t stop there. In 2001 she joined with other volunteers, many living with SCIs, to do a fundraiser to support research. They organized a golf tournament in their little town of 600, and Research for Cure was born. Today Research for Cure hosts a golf tournament, 5k run, and two dinner auctions annually. They have no office space, equipment or salaries in their budget, just the expenses of their fundraising events. Karen believes that the commitment of SCI survivors is just as important as the commitment of research scientists if we are to accelerate progress and bring therapies from the lab to human application. To date, Research for Cure has raised more than $450,000 for the Reeve-Irvine Research Center.
        I know good things will happen as a result of this conference. The collaboration that went on during this conference will continue in the days and months ahead and move us closer to a cure. It certainly renewed my commitment to cure paralysis!
        "Our lives begin to end the day
        we become silent about things that matter."
        - Martin Luther King Jr


          I was there as well, although it would hard to tell as I didn't get social or go outside to hobnob after the sessions due to the fact that I was having temperature problems and it was too cold for me . Then, on the last night I had to go to the emergency room with spasms strangely going out of control way bad.
          "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 and copy and paste this message to the bottom of your signature


            It was my great pleasure to meet with Karen and Barbara!

            The following is Dr. Philip Horner's research going on at University of Washington:-

            Phase I Pilot Study for Pre-cliical Trial with iPS-derived Glial Precursors for Chronic Lesions of SCI

            1. Determine if stem cells create a zone of plasticity, is there chronic myelin repair?

            2. Combine stem cells transplant with adjuvant therapies: scar disruption & e-stim

            3. iPS transplanted 1 mth post injury

            4. iPS colonies contain neurons and astrocytes

            5. Produce patient specific cell lines under GMP conditions


              Hi, Suzanne!

              Glad you and Phil Horner got to meet & I really hope we can all get together in Seattle while you're in the Pacific Northwest.



                Originally posted by kate View Post
                Hi, Suzanne!

                Glad you and Phil Horner got to meet & I really hope we can all get together in Seattle while you're in the Pacific Northwest.

                Hi, Kate!

                I have not met Phil Horner in Seattle but spoken to him at the W2W. Hope to see you, Bruce & Dr. Horner perhaps next year in June when I am back in Vancouver again. The information I posted earlier was from his slides presented at his talk at the W2W Symposium.
                Last edited by poonsuzanne; 19 Nov 2010, 2:11 AM.


                  Any news on actual trials for chronics? Any mention of Geron or wise's trials?

                  Thanks in advance

                  keeping on


                    A big thank you!

                    On behalf of our delegation from Norway I would like to send a big thank you to all the folks behind the W2W 2010 conference in Phoenix. It is very much appreciated and it is fantastic work the U2FP and their relatives and friends put down for creating such a good environment for SCI science discussions which conferences such as this are. All of us from over here was very pleased with the conference and are very glad we attended. We also thank you for your great hospitality and welcoming attitude. Thank you very much.

                    It was great to listen directly to all the speakers at the conference, most of the scientists had very good presentations and one clearly could see that the tides now are changing for bringing regenerative curative treatments for spinal cord injuries further. Sure one can discuss the timeframes or the lack of science in some areas but that is how it is in any R&D business at stages like this, like one scientist expressed it; science goes in steps. Still one was discussing clinical trials and as a matter of fact, some of the scientists and companies attending the conference are now in clinical trials albeit an early stage, but still this is a huge milestone in the history of SCI.

                    Great conferences like this is steps along the way to bring curative treatments for SCI. This is also why it is so important to attend conferences such as this. I have attended several SCI conferences and always something new and good occurs due to attending such conferences. Above listening to all the scientists and others it is also very important melting pots and think-thanks for brainstorming and direct discussions. Conferences like this are very important for establishing of new contacts with folks that has the same goals, namely to find treatments for SCI. And as for this the W2W delivered big time. I myself (the others from over here too) spoke to several of the scientists and discussed concrete ways of how one can help and collaborate (cant write to much of that here since it is only discussions) but these discussions will be carried on for materialization hopefully sooner rather than later. A lot of new connections (I like to call it synaptic connections) with other spinal cord injured peoples and their next of kin was also made, and I’m quite sure many good things will occur due to this as well, like we already have seen in some discussions (outside of this forum), which have started. Several countries outside of the U.S. were also represented, from all over the world, but especially from Europe several attended. Several countries in Europe want to do what they can to help out for curative SCI treatments, in some countries this has started and in some countries it will start. And in light of that, the W2W was also a great melting pot for connecting peoples with the same goals, to fix SCI.

                    Thank you again,


                    Kate, here is some minor corrections from you’re posting above, no big deal, just leave it as is, but I thought I would like to comment a little bit. And thank you very much for you’re bloging efforts!

                    There is now a national organization, but they focus on care . . . not cure, not rehab, not research, not prevention
                    I’m not quite sure about this, but I think this was about our national ‘umbrella’ organisation for disabled, which we are a part of, but they focus on rehabilitation too, which is great. Our national SCI association goes a step further though, also focusing on therapies, since we are a diagnosis association.

                    Leif says it used to be that rehab was always like a sausage factory, meat in -- meat out. (Laughs to see me typing that down.)
                    Here I meant different meat in and one standard sausage out. One used to process one standard way of thinking. This is more harmonized now and cure work is quite acceptable.

                    Leif: We're in the rehab centers. We try to have them sign up as soon as they're out of anesthesia! Unless an injury is traumatic, people tend to get dumped out and abandoned.
                    Here I meant the non-traumatic injuries are not always so easy to catch, for example if these injuries are treated at more general hospitals not typically dealing with SCI. They are not dumped and abandoned per se, but more difficult to catch by the established SCI-units. If registered at the SCI-units one normally will be called in for check ups at different times and so on for lifelong follow-up.


                      Photo slideshow from W2W.

                      Slideshow created by my wife, Marilyn.
                      Last edited by john smith; 24 Nov 2010, 11:17 AM.
                      "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang


                        As promised, lo these many days later . . . links embedded below
                        Originally posted by kate View Post
                        When I met Suzanne Poon (first I couldn't believe she had an 18 year old son), she asked me if we could do something in China.

                        We formed a partnership in 2004 and set up the network in 2006.

                        We had to choose a therapy to test . . . we picked umbilical cord blood + lithium. It was the most promising and the safest to do a clinical trial with. I didn't invent it.

                        Showing a picture of a rat cord that has had a 10 gm weight dropped onto it from different heights. If the weight is dropped from 12.5 mm, the rats are injured but recover. Twice that height, they don't recover.

                        Slide showing a cross section of an injured cord . . . there's a black hole surrounded by axons trying to get in but not growing out.

                        So, how would you bridge the injury site? The site is filled with macrophages and astrocytes. If you put cells right into the middle of the injury, they're stuck there. So you put cells on the edges of the site (at 45 degrees) and they migrate in and form a bridge.

                        What kind of cells should we use? In 2006, there were only two approved sources (GMP, he means, because it means the cells were sourced using Good Manufacturing Practices). Adult or neonatal GMP cells were either bone marrow or umbilical cord blood. The other options were fetal (from abortions) or ESC, which were not readily available in 2006.

                        He likes cord blood cells because they stay where you put them. They also are recognized by the glial cells as part of the central nervous system and that means the glial cells don't attack them.

                        What about lithium?

                        it's a drug used for manic depression . . . we all have it in our bodies . . . it's very, very cheap. And it inhibits an enzyme AND increases cell growth. Wise had heard that it seemed to repair sci, so he put his cord blood cells into his injured rats, then treated them with injections of lithium . . .

                        Showing a list of about a dozen papers published about how umbilical cord blood works in sci.

                        Dasari published a paper (which I'll hook you to when I get a minute) that Wise is describing now. Rats were made to not just walk, but to walk on a beam, which is a lot harder. Also -- Wise is so funny -- demonstrates what it looks like to hold a dangling rat treated with lithium & cord blood and stroke its limbs.

                        Yick 2004 (another paper I'll find and link to . . )

                        Now doing CN 102b in china
                        have a usa network, which will test the phase 3 study
                        they will also be doing it in india
                        showing a picture of a young chinese woman who was the reason for starting clinical trials
                        suzanne poon shown surrounded by the rest of the china board

                        Time for Ed Wirth, from Geron
                        Love seeing the images and video from the conference . . . in the moment, it goes by so blasted fast.




                            Thanks John. Nicely done!


                              Thank you for the slideshow John! Oh, how I missed being there!!!


                                Originally posted by kate View Post
                                Spinal cord pathways . . . Stephen always has beautiful slides, but too full of information to do justice this quickly in words. Please check out the video of his talk when we get it up.
                                Any luck getting the video up yet? Thanks!