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Thread: Rick Hansen doesn't dream to cure SCI

  1. #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.

  2. #12
    Quote 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

  3. #13
    Quote 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  My point is that they are focusing just on that now. 20/30 years ago that would have been fine, today it seems to me "out of date" to dream JUST that.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

  4. #14
    Quote 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

  5. #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

  6. #16
    Quote 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.
    Great post. I agree with everything you said.

  7. #17
    Senior Member Van Quad's Avatar
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    Just yesterday at GF Strong I was talking to a mother who's injured child was being visited by Rick. Love him or hate him, he still makes time to do the little things that count.

  8. #18
    If you think all the disable are going to be healed when they find a cure for SCI, you are wrong. Accessibility is as important as it always has been.

    I wish the leader of LARS will understand that, and not be against accessibility. I know people in wheelchairs who are inside most of the year because of the lack of it and people who will never be cured or healed and still be in a chair.

    Don't think I am against the cure, I wish we would have one before I am too old. But all public places should be accessible if possible.

    Maybe it is more importent for me now because I have not been outside since before Christmas and yesterday I was not able to go to the meating for accessibility for my part of town because it was 1 meter of ice that I couldn't come over to get out of my back yard.
    TH 12, 43 years post

  9. #19
    Quote 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.
    KiranA--I so agree with you and think this is a prime example of "No Good Deed Goes Unpunished."

  10. #20
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    Quote Originally Posted by woman from Europe View Post
    I wish the leader of LARS will understand that, and not be against accessibility.
    With all due respect but this is flat out yet another lie by you with no foundation in the real world. I have never been against accessibility or independent living and if you had paid any attention at all you would have known that. I have been heavily involved the last year (and before) with numerous of meetings with our government on many different levels like project work directly under our Health directorate and other important meetings throughout the year just to mention some, where disability issues has been on the agenda ranging all the way from prevention, accessibility, better care, helping aids, work & school, information brochures on SCI and work for funding for all of this. All on a voluntary basis (not paid work). And so have the rest of the Norwegian organization and all the local chapters. The organization in fact with our national meetings and the local chapters meetings work on a variety of these issues also by different lectures on these issues, but how would you know? You don’t even show up at the local chapter in Oslo when they have different activities and meetings. I’m tired of you’re constant whining and lies, -how about you start to do something yourself for example? Please stop you’re lies.

    Sure I am mostly discussing cure here at this forum, but there are reasons for that and it has nothing to do with other things I’m involved with, like I am not required to post all other things I am involved with here at this site. This forum is named care and cure. On care for example we have pretty good control of as it is in Norway, but one are of course focusing on improvements and working good on many different topics as for this, and again I am not required to post all of this here. Cure on the other hand isn’t so much discussed in Norway previously so this is a great place to discuss such issues. Accessibility we also have very good arrangements for discussions and actions throughout the organizations in Norway so I don’t se to much of a point on discussing this on a American forum thousands of miles away from Norway, like you try to do without doing much at home, and on this I have for example not seen any articles or anything you have contributed with in Norwegian organizations or elsewhere, thus I think you whine to much on others, demanding others to do everything for you while you don’t do much yourself. So again, please stop this nonsense you spew and try to do something too!

    This is also a discussion in a cure thread and I’m also tired of you trying to ruin such discussions all the time.

    To others, please excuse me for responding like above, but lies will not go uncommented.

    The reason Paolo and others are addressing RHI or for that matter ICORD isn’t on accessibility issues or care issues, but research on cures, try to understand that. None is blaming Rich Hansen for not doing a great job for SCI, but if one investigates ISCORD and RHI one will see that there isn’t much on SCI cures. They use the word cure in their portfolio but there isn’t much. One thinks that the public should be aware of this, given the huge money they get from the public and individuals whom donates and whom also might think they are working on cures. And as for ICORD does one think it is a good idea to build this huge facility to do studies on crutches? I don’t, studies on crutches I feel an ordinary bike shop or similar could have done. One are simply questioning the best usage of funds on cures, well since they claim cures is part of the agenda. And due to the opening of ICORD in 2008 where press releases stated that research at the facility, for therapies, would benefit the whole world, and also since they claim they are international, -people living outside of Canada should also be welcomed to ask questions and question their strategies. And again, especially since they go out and ask for donations on cure research too. That’s why.

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