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Rick Hansen doesn't dream to cure SCI

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    Rick Hansen doesn't dream to cure SCI

    I read the following on Rick Hansen Foundation web site:

    "RICK HANSEN HAD A DREAM. HIS JOURNEY CONTINUES... »

    Twenty five years following his legendary Man In Motion World Tour, Rick Hansen’s journey to realize his dream of a world inclusive and accessible to all, continues. Building on a lifetime of extraordinary accomplishments, Rick believes his... best work is still in front of him; challenging us to dream extraordinary dreams, to focus attention on accessibility and to remind everyone that when we remove barriers, anything is possible."

    I would like to ask Rick: Isn't time to dream to cure SCI? And: what would you do with a world without barriers if you were vent dependent?



    http://www.rickhansen.com/code/navigate.aspx?Id=1

    See also this: http://www.facebook.com/?tid=1286723944832&sk=messages#!/rhwim

    and this: http://www.facebook.com/RickHansenInstitute?ref=ts

    It's time we protest seriously in my opinion.

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

    #2
    And if you want to see how they waste a lot of money go here:

    http://rickhanseninstitute.org/en/pu...annual-reports
    In God we trust; all others bring data. - Edwards Deming

    Comment


      #3
      Barriers can´t be removed completely. His dream is a waste of time and money.
      Cure is easier and probably cheaper.

      Why people with voice and resources don´t invest them in the right way?
      -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

      -Hoc non pereo habebo fortior me

      Comment


        #4
        a one man version of the miami project.
        "I'm manic as hell-
        But I'm goin' strong-
        Left my meds on the sink again-
        My head will be racing by lunchtime"

        <----Scott Weiland---->

        Comment


          #5
          Rick Hansen is the last person in the world I want to bag on, but yeah, it's hard to reconcile "dream big" with "registry and data management".

          Comment


            #6
            Originally posted by paolocipolla View Post
            And if you want to see how they waste a lot of money go here:

            http://rickhanseninstitute.org/en/pu...annual-reports
            I don't think I'm reading the same report you did... on page 17 of the 2010 report, for example, almost half of their spending is going to translational research, which is focused on treating and curing SCI...

            And bagging on the registry??? That is a HUGE project to build the infrastructure needed for exactly the kind of multi-center effort it is going to take to find a cure. The same registry structure is responsible for most of the headway made in cancer treatment over the last 15 years since the national cancer registry was established.

            Comment


              #7
              Not everybody who uses a wheelchair or deals with unaccessibility issues has a sci, sometimes even going somewhere with a newborn(baby car) can be an hard task.

              Comment


                #8
                Originally posted by dr.zapp View Post
                I don't think I'm reading the same report you did... on page 17 of the 2010 report, for example, almost half of their spending is going to translational research, which is focused on treating and curing SCI...

                And bagging on the registry??? That is a HUGE project to build the infrastructure needed for exactly the kind of multi-center effort it is going to take to find a cure. The same registry structure is responsible for most of the headway made in cancer treatment over the last 15 years since the national cancer registry was established.
                "Translational research" at ICORD: http://icord.org/research/research-studies/

                From what I can gather, the various organizations funded under the Rick Hansen umbrella are almost wholly care-oriented. Seeing as they still have no plans to even start clinical trials aimed at a cure for chronics (I confirmed this a few days ago with one of the directors of research), I'm doubtful that the registry will be put to anything other than more care management for the foreseeable future.

                PS. I would love to be wrong about this.

                Comment


                  #9
                  I'm tired of everyone ragging on the work done through the Rick Hansen Institute. What that one man has done for bringing awareness about the MANY issues faced by people with disabilities is incredible. Because of him, I am able to get around most Canadian cities, because our curbs are cut, our major buildings have elevators, and bathrooms are fully accessible.

                  My daily life has been profoundly impacted by this man. Because you guys are not Canadian, perhaps you haven't had the opportunity to witness the work of this man firsthand. I can appreciate your frustrations, but at the same time, you need to understand that as much as it would be nice to get my legs back, it's not going to happen in the immediate future, and I'll be damned if I'm forced to sit at home and wait because I can't get around my city.

                  Take your protest elsewhere.

                  Comment


                    #10
                    It seems like some people think that everybody in a wheelchair has a SCI. What about the rest with MS, CP, ALS, stroke, a.s.o. They don't need accessibility?

                    I can't go around in my town like Kiran can, the lack of accessibility is huge. So I have to wait for the cure before I can use the train, the bus, the tram, the bathrooms, the shops, go to the pub and restaurant I want. It has been better the last couple of years, but it is not good enough. I can't go inside the school of my child, visit my family and friends. Think of all the children who have to be carried in and out of the school every day and stay inside in the breaks. What about all the people without job because most jobs are not accessible

                    I am not against the cure, but I can't see that means I have to be against accessibility.
                    TH 12, 43 years post

                    Comment


                      #11
                      My personal opinion is that for sure great things have been done from HRI but I think that now it is time that they change their main focus!
                      KiranA says “as much as it would be nice to get my legs back”….yes, but to make this happen we also need people working for it, we cannot only dream it.

                      Comment


                        #12
                        Originally posted by dr.zapp View Post
                        I don't think I'm reading the same report you did... on page 17 of the 2010 report, for example, almost half of their spending is going to translational research, which is focused on treating and curing SCI...

                        And bagging on the registry??? That is a HUGE project to build the infrastructure needed for exactly the kind of multi-center effort it is going to take to find a cure. The same registry structure is responsible for most of the headway made in cancer treatment over the last 15 years since the national cancer registry was established.
                        Dr. zapp,

                        can you tell me also what kind of reserch they are "translating" and also what is their definition of a cure?

                        If you dig into this, you could be disapponted..
                        In God we trust; all others bring data. - Edwards Deming

                        Comment


                          #13
                          Originally posted by KiranA View Post
                          I'm tired of everyone ragging on the work done through the Rick Hansen Institute. What that one man has done for bringing awareness about the MANY issues faced by people with disabilities is incredible. Because of him, I am able to get around most Canadian cities, because our curbs are cut, our major buildings have elevators, and bathrooms are fully accessible.

                          My daily life has been profoundly impacted by this man. Because you guys are not Canadian, perhaps you haven't had the opportunity to witness the work of this man firsthand. I can appreciate your frustrations, but at the same time, you need to understand that as much as it would be nice to get my legs back, it's not going to happen in the immediate future, and I'll be damned if I'm forced to sit at home and wait because I can't get around my city.

                          Take your protest elsewhere.
                          Kiran we all argree that what has been done by RHF in the past is great, don't get me wrong.

                          My point is that they are focusing just on that now. 20/30 years ago that would have been fine, today it seems to me "out of date" to dream JUST that. Rich is getting old, just like me!
                          For example I recognise that when I talk to people younger then me with or without SCI they have more fresh energy & vision so I always encourage young people to take action - learning from old people - but more important is keeping in first place the new visions/hopes/dreams they have.

                          Finally, from what you say, I suggest you should dig a bit more into RHF/RHI.

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

                          Comment


                            #14
                            Originally posted by woman from Europe View Post
                            It seems like some people think that everybody in a wheelchair has a SCI. What about the rest with MS, CP, ALS, stroke, a.s.o. They don't need accessibility?

                            I can't go around in my town like Kiran can, the lack of accessibility is huge. So I have to wait for the cure before I can use the train, the bus, the tram, the bathrooms, the shops, go to the pub and restaurant I want. It has been better the last couple of years, but it is not good enough. I can't go inside the school of my child, visit my family and friends. Think of all the children who have to be carried in and out of the school every day and stay inside in the breaks. What about all the people without job because most jobs are not accessible

                            I am not against the cure, but I can't see that means I have to be against accessibility.
                            Where did I say I am against accessibility??

                            Read carefully my post please.

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

                            Comment


                              #15
                              Guiys, the good news is that every illness mentioned; ms, als, and others. are being worked on now. the stem cell articles that I mentioneveryday are usualyy for other ailments other than spinal. Treatments for all will be avaialble in the future not avaialble now. We have ot be positive and look for factual fidnings. 2011 is a big year for all of us, no matter what the illness. Don't lose sight of this fact.

                              keeping on

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