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Live from Working 2 Walk 2010!

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    Live from Working 2 Walk 2010!

    Woooo hoooo, we're here! Phoenix is lovely and (to this Pacific Northwesterner) oh so dry. Gotta refresh the lip slime every 10 minutes, but aside from that, wow. Nice place.

    So, the hotel is a titch proud of their internet access in the conference rooms, but we'll be posting live tomorrow and Friday. Tonight was a rather interesting pre-conference meeting that I just took notes on and I'm gonna post 'em here for your entertainment. Here's what your friends from around the world said to each other a couple of hours ago . . .

    Helloooooo we finally got a big international w2w meeting going, only took a few years and a bunch of hope – thank you Donna . . . introductions:

    Marilyn from Oregon
    Donna from Ohio
    Colin and Sue from Minnesota
    Martin from Ireland
    Dave from Pennsylvania
    Jody from Kennedy Kreiger
    Barbara from France (but she's Irish)
    Carles from Spain
    Gintare (who keeps getting called a Russian spy; she's from Eastern Europe)
    Simen from Norway
    Leif from Norway
    Yoakim from Norway, points to pretty woman next to him, says, “I'm her . . . everything.”
    Eilin from Norway, on the board of NSCIA, she's a lawyer, has worked with antidiscrimination in Norway, been scid since 1987, incomplete c5.

    How big is the Norwegian Spinal Cord Injury Association?
    We have a thousand members, out of 4 or 5 thousand injured people sci'd in Norway – (WHAT? 20-25% membership nationally? That is awesome. We seem to have about 4 or 5 thousand separate associations here in the USA.)

    Leif talking at lightspeed with a Norwegian accent:
    • we have youth counselors, and hospitals hire our members to do peer support
    • when we want to go into clinical trials, we will have all the ducks in a row
    • started in early 80's, was named something else
    • funding depends on creativity, some govt money, some from umbrella org
    • gambling is one of the ways they get money
    • they use lotto money, which they have to apply for through grants
    • insurance companies . . .
    • they wanted to make a campaign and found that ins companies would fund a program to lower traffic injuries
    • we outsource the work, we don't do it ourselves
    • none of us get any money from this organizations
    • they're verycareful with the handling of the money, making sure they're always ahead of the need

    Donna: Hmm. Could we appeal to insurance companies?

    Leif: We must send a constant stream of grant applications, must do dozens for each grant we get. Usually they fund you year after year.
    The ins company name is then on the project, when we put the ad on the television, everybody's name goes on it. . . . free advertising for them
    got money to produce brochures
    There is now a national organization, but they focus on care . . . not cure, not rehab, not research, not prevention

    Is there a conflict between care and cure?
    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.)


    Carles: The problem in Spain is that there aren't a lot of grants that give money to research.
    It all comes down to education . . . 5% or less of the community speaks English
    There's virtually nothing in Spain . . people are isolated in themselves. They don't know anything at all. Not at all. The only organizations are a couple of national ones. There are a lot of injured people. 100,000 people with sci. The big organizations are focused on their one annual social event – no care, much less cure. They're zombies.

    Say a doctor has a potentially good treatment for sci. He's not going to get any support from these organizations. Information drives everything, but there isn't any. People have to understand . . . when I was in the hospital, I remember my father telling me there's something like stem cells, and I was like, come on . . . I had to learn. It's not that I'm a super believer, but when you have the information, you can't stay still.

    (Well said!)

    One of the approaches that we're doing is using famous people to drive the attention, because if I say it, it doesn't have any value. If you get Will Smith to say it, that's another thing. I'm catching all the Will Smith's in Spain to say it.

    I wrote an article called the Myth of Science which is going all over now in Spain. I talk about how we get taught in school that there's something called science that can fix all the problems. You picture a big laboratory full of people working together and producing results.

    But there's nothing close to that. The reality is that scientists are people who have families and their own problems. They don't even know each other!

    Everything is curable – cancer, whatever – science is quick, really. It's just money and communication.
    (This is so cool . . . he's like a member of the u2fp board talking.) Every person who gets out of the hospital is another brick in the wall. I don't blame them; it's not their fault.

    Leif: When I was at the health department last week, we were talking about a plan to address all kinds of neurological issues, including research. Their idea of research is demographic studies! They don't know. I had to show them links to what is happening. The gov't has to support this research by putting up the necessary infrastructure.

    Barbara: I'm an Irish person living in France. What I see is research for its own sake, but not aimed at getting to people.

    Martin: Ireland is on the periphery; they're aggressive, but a lot of the people on the boards of these organizations have been in chairs for a very long time. They don't know about a whole list of technologies. I sat down with one of the chairs of one of the boards and showed him what was being done. Some of them have become comfortable being in chairs – which I respect – and they're making decisions for all of us, and more, for people who have not even been injured yet. I want them to open their minds as to what people who haven't been injured yet would like them to be doing. As of this moment, they're all about CARE. A lot of money and energy gets wasted.

    We newly injured people waste so much time and energy traveling to places where there is only snake oil. The first line of people we face is the rehab specialists. You're told to hope for stem cell research, and you google away and then realize most of 'em are scams.

    The fact is that the medical profession doesn't sit you down and educate you, you're not going to get it. We tell them, predominantly, that we want better wheelchair ramps. They're not looking at the big picture of where science is today. It's not the science; it's people. And that really pisses me off! That's bullshit. We're traveling to countries where treatments they're doing are way less safe than what our own governments aren't letting our own scientists do.

    (Martin's clarity is bracing!)

    Leif: It's more about finding agreement about what to do.

    Donna: How is your organization grown?

    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.

    Donna: When will Europe be ready for a w2w?

    Carles: I will take care of Spain. Big smile. Talking about how the money appears when the need is obvious. Katrina? Haiti? Malaria . . . but malaria hasn't been on television. It all comes down to people doing whatever some famous person is pushing. So, what he's trying to do in Spain is to create that buzz. We have a pretty good team of motivated people. I only hire crazy people . . . sometimes I don't even care if you know how to do things. I care about how eager you are to learn. That's actually what gets results. We had 300 people join this facebook page, but when we started uploading pictures of famous people sitting in wheelchairs, we suddenly got 1,000 new members.

    (Very interesting . . . you get buzz by shocking people. But wouldn't that just piss them off quickly, and then they never listen to you again? You'd have to be so careful.)

    The last guy we took picture of was the coach of the Barcelona football team.

    (It doesn't need to be true, just interesting. Geez.)

    Carles: When I was doing research on marketing in Spain, I was looking at bus stop walls . . . you can do this thing with mirrors and stickers to get people sitting on the benches to see themselves sitting on a wheelchair. People don't even know where Haiti is on a map, and yet they donated money. You can ask, how are they now in Haiti? I don't know. If tv tells you to care about something, you will. That's how we are. It's a game of stupid people, but so what. That's the game we're in.

    Suppose that the world was going to end unless we found a cure for paralysis. We would be walking next summer.

    The science is there. We just need to push through the final end; lots of technologies can heal mice, but we have to find out which ones work with humans.

    ESCIF in Brussels would be the way to have a European w2w. Brussels is like DC . . . the center. (Later Eilin says that she's been to Brussels before and accessibility is horrible.)

    SCI costs 18-20 Billion Euros every year. The economic argument is strong.
    It takes 6 months to plan w2w. We're talking kind of over each other about why 2 years, how quickly could we really do it, what would be the process . . . how many people would come, do we really want 10 or 20 people to show up?

    Yes, says Martin. There's nothing wrong with that. You start, and you build awareness, and the next time it's better.

    Donna: we'll have video of all these scientists speaking; you'll be able to share some of this with all the people who seem to need it.

    Much general conversation about the idea of a Europe w2w . . . and then we ask, does anyone here really want to do this? Who has the time and energy? More conversation, and then we see that we're not ready as a group to tackle that project.

    A beginning EU w2w might be a meeting the size of this one, with 10 or 20 people around a table, getting to know one another.

    Move on to talk about ISCOS, which is an international conference about sci medicine and rehab. It's this June (4 – 8) in DC.

    Could we consider holding w2w in conjunction with that? Just before, just after? Right now it seems beyond the beyond, but . . . u2fp agrees to think it over before we leave Phoenix.

    Carles: Only been hurt for a year. He was a cop working in drug enforcement. Met Martin, who gave him reason to wonder about what to do next.. “He created a monster.”

    Carles: There's more people like us. There must be.

    Martin will broach the idea of a w2w (very small scale) with his contact (Jane) at ESCIF

    ISCOS possibility is on the u2fp board's agenda.

    Martin mentions Wings for Life as an organization that is doing terrific work in Europe; if he had millions right now, he'd give it to them. Keep 'em on the radar.

    We end at 6:40 pm. Also known as beer-thirty.

    See you tomorrow for the science symposium.

    Thanks Kate, and a big hello to everyone there!


      Love it, Kate. Thanks!


        This is the 1st time I wished I were somewhere else in, like, forever. Or since July. Thnx for the kickass report, Kate, and thanks u2fp and all who made it there!
        Does This Wheelchair Make My Ass Look Fat?


          Originally posted by betheny View Post
          This is the 1st time I wished I were somewhere else in, like, forever. Or since July. Thnx for the kickass report, Kate, and thanks u2fp and all who made it there!
          Miss you. More than you know.


            Thanks Kate - greate report. See you all tomorrow


              Did i talk for that long? That's the down side when taking a looong trip all alone
              Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

              Fenexy: Proyecto Volver a Caminar

     (soon in english too)


                Originally posted by 0xSquidy View Post
                Did i talk for that long? That's the down side when taking a looong trip all alone
                Carles, I could not EVEN keep up with you . . . but Leif was even faster.


                  I hope we all get to find each other. I'll be the guy in the wheelchair. LOL. Lucky for me, my mom is going with me tomorrow. If it wasn't for that I wouldn't have been able to go. I wish we had a place where we were all going to meet. Maybe I'll send a couple of you my cell phone number.
                  C-5/6, 7-9-2000
                  Scottsdale, AZ

                  Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.


                    Thank you so much Kate, and too you all guys there
                    Last edited by Johnnie Walked; 11 Nov 2010, 5:55 AM.
                    keep (rolling) Walking

                    Please join me and donate a dollar a day at and copy and paste this message to the bottom of your signature


                      Thanks Kate! Wish I was there!
                      “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005


                        Originally posted by wildwilly View Post
                        Thanks Kate! Wish I was there!
                        Ditto! - please keep us posted!
                        "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 and copy and paste this message to the bottom of your signature.


                          8:45 am- let's go!

                          Sitting in the hotel ballroom where the tables are filling up as people wheel in and take places. Marilyn (the Great) is behind the podium asking for stragglers to come in.

                          She speaks:
                          we're gonna get started because we've got a busy schedule ahead and we'd like to stay on it if we can

                          turn your cell phones off, eh?

                          one schedule change -- sabrina cohen wasn't able to make the trip, so we'll shift to cover that

                          there's a raffle, got some good prizes, buy a ticket, winner announced tomorrow at lunch

                          some very extraordinary people make this event happen -- starting with sponsors, who give us the money to make this affordable and accessible to anybody who wants to be here. it's our sponsors who make that possible. Check out their products and services at the booths outside

                          our speakers are a very distinguished group -- on the cutting edge of both the research and the recovery community.

                          we're introducing an advocacy session this year, and some stars from that realm have given up some time to be here.

                          we always hear from scientists how much it helps them to interact with people in chairs -- take time to talk with them; it's why they came here.

                          we also have extraordinary gang of volunteers, who started about 6 months ago making this work . . . thousands of emails, phone calls, work, work work. also have volunteers who flew out here to do the on the ground work that has to be done.

                          and last but not least, the international guests -- 5 people from the norwegian spinal cord injury association are here (applause as they give a norwegian wave) -- barbara is here from france -- carles from spain -- martin from ireland. Both barbara and martin are on the 2nd trip to w2w.

                          remembering that today is veteran's day. sci and tbi are common battlefield wounds -- saying thanks to them

                          pause for introductions at the tables to people we haven't met

                          gosh, i'm glad to be here.


                            almost time for wise!

                            marilyn is introducing the incredible suzanne poon. (who if you haven't met her looks like a teenaged movie star, but is actually the very activist mom of a son with sci)

                            so, here we all are. you're the people who don't accept that you have to be paralyzed for the rest of your lives. 5 years ago the scientists who came to our first rally looked the attendees in the eye and said, we really don't have much for you

                            depressing but motivating . . .

                            this year we're going to hear about human clinical trials -- a big step, but just a step in what is going to be a marathon.

                            we can't rely on the corporate world, or the gov't, or anybody but ourselves. it's a tough go, because of what sci is -- an everyday struggle. once you get your head around it, lots of people just don't feel the urge to go out and take on another struggle, which is what fighting for a cure really is.

                            after people have made the giant jump to independence & work, many of them turn away from paying attention to science or trying to raise awareness

                            it's understandable, and yet . . . there are those who can't make that giant jump, and some who can't get past the despair.

                            coupla weeks ago i had dinner with a young man who was injured in august; i asked him if he'd like to come to phoenix, and he said, nah, there's really nothing there for me

                            this attitude is normal . . . call me when the cure comes.

                            i also met a woman who'd just had 2 successful treatments for breast cancer. she knew she was lucky, and she remembered the trauma of the diagnosis and the chemo. this woman decided to be an advocate even though she personally was ok.

                            think about the breast cancer funding. i urge you to think about sabrina cohen, who wanted to be here but couldn't because she couldn't find anybody to travel with her. work for the people who can't leave their homes, or can't use their hands, or who are stuck in nursing homes with no place else to go. speak out for the people who could not endure life with sci and took their own lives.

                            speak out because it enriches your soul

                            she's introducing susan maus

                            my dear friend, whom i first met after some online conversations in 2005 that led to the first rally.

                            sue comes from a pretty extraordinary family, who are buzzing around here making everything work, she works full time in IT, and she's u2fp's board of directors.


                              Sue Maus

                              She's rolling up to the dais.

                              you know, marilyn is really the driving force behind u2fp. she does most of the work, along with donna sullivan, who had to step up and take over everything i've been accustomed to do and couldn't this last year because of a long illness.

                              i get to introduce all the really cool people!

                              starting with wise young, whom lots of you know as the guy who started carecure . . . it's such an important place for so many of us.

                              he's the director of the keck center at rutgers university, and he's the guy who went to china and laid the ground for a network of clinical trials.

                              (editorial comment -- i first heard wise talking about the need for that network in 2003)


                              in a white shirt, trying to get the microphone working -- GIANT feedback ouch! -- thanks to sue and marilyn.

                              you are both my heralds. these last weeks have been very emotional for me. starting when one of the rutgers football players got an sci in a football game. our community is in mourning, everybody following his progress, just as families do everywhere.

                              i spent the last 10 days in india, where having an sci is frightening. i met a young man who had been in a car crash 2 years ago, where he was dragged out of the car with his head dangling and made to sit in an er for hours with his head unsupported . . . he's the son of one of the richest families in india.

                              it's not a matter of money, it's a matter of ignorance.

                              i don't know how word gets around, but by the time i left there were people following me around with stacks of mri's . . . please tell me what this means.

                              india doctors say the opposite of what usa doctors do. here sci people hear "you'll never walk, get used to it."

                              in india they say "walk or die."

                              and many incomplete patients from india do walk . . . when they studied incompletes here in the usa in the 90's, they found that 90% of them could recover -- as opposed to 50% when similar studied in the 70's.

                              maybe telling incompletes they can't walk is having a NOcebo (opposite of placebo) effect.