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Thread: Rick Hansen concludes China tour at Hong Kong SCI youth Rally; eleven- day visit resu

  1. #21
    Paolo,

    Please stop. I have spent much time with Rick Hansen and can say unequivocably that he supports the cure of spinal cord injury. We are working together. I support his organization and he supports us.

    May I suggest that we stop criticizing spinal cord injury organizations because we disagree with their particular goals. There is room for all types of organizations. Just because a group doesn't do things exactly the way you think that they should do it does not mean that we should be criticizing them.

    This tendency to criticize spinal cord injury organizations that emphasize care or life, as opposed to cure, is not desirable. Please, there has been a lot of criticism on this site on Miami Project and other organizations. Such criticism helps nobody and only hurts us as a community.

    Why don't we criticize external factors and forces that have held back care, cure, and life for our community? For example, there were few voices raised on this site when the Governor of New jersey took away the spinal cord injury research money from traffic tickets.

    Nobody said anything when Congress failed to increase NIH funds for spinal cord injury research for the past decade. Many spinal cord injury laboratories have closed and yet there was not a word of protest. In fact, I heard a lot of ignorant criticism of NIH funded research.

    There was no outcry when Obama shoveled over a trillion dollars of stimulus for the United States economy and none of that went to clinical trials, improving care of people with disabilities, or providing infrastructure to improve accessibility.

    Look at what we are doing here on CareCure. People are attacking spinal cord injury organizations instead of the real culprits of our situation, i.e. the economy, the governments who have failed to allocate priority to care and cure of spinal cord injury, the lack of access and jobs for people with disabilities, the companies who refuse to invest in the field because it is considered to be a small market, and people who think that there is no hope, etc.

    It is so sad and so bad when we have Europeans criticizing American or Canadian organizations and vice versa. Do you really want Americans and Canadians to start attacking European spinal cord injury organizations? As you know, there is plenty of fault on all sides. It helps nobody. It has to stop.

    Please choose to support one or another group and stop the backbiting. Such criticisms polarize the community and prevent collaboration. The HKSCIFund spent a HUGE amount of time and effort to support Rick Hansen and the 25th Anniversary of his Man-in-Motion tour. ChinaSCINet supports them. They support us. We work together. Isn't that the way it should be?

    Wise.

  2. #22
    Quote Originally Posted by Wise Young View Post
    Paolo,

    Please stop. I have spent much time with Rick Hansen and can say unequivocably that he supports the cure of spinal cord injury. We are working together. I support his organization and he supports us.
    I am happy to hear that.

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

  3. #23
    Quote Originally Posted by Wise Young View Post

    Why don't we criticize external factors and forces that have held back care, cure, and life for our community? For example, there were few voices raised on this site when the Governor of New jersey took away the spinal cord injury research money from traffic tickets.

    Nobody said anything when Congress failed to increase NIH funds for spinal cord injury research for the past decade. Many spinal cord injury laboratories have closed and yet there was not a word of protest. In fact, I heard a lot of ignorant criticism of NIH funded research.

    There was no outcry when Obama shoveled over a trillion dollars of stimulus for the United States economy and none of that went to clinical trials, improving care of people with disabilities, or providing infrastructure to improve accessibility.
    Where was CDRF for example?

    I did the little I could from here like I am trying to help as I can to get bill AB 190 passed in California now.

    like it or not many SCI orgs could do a better job. I do what I can and I always try to be as nice as possible in proposing ideas etc... but guess what? Being nice I didn't get much attention and no real usefull results. It seems to work better the opposite approach unfortuantly. I'll tell you more details soon.
    Then sure sometimes I may be too hard, but it is not easy to figure out the right dose of hardness.

    I'll try to be nicer.

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

  4. #24
    [QUOTE=Wise Young;1357839

    May I suggest that we stop criticizing spinal cord injury organizations because we disagree with their particular goals. There is room for all types of organizations. Just because a group doesn't do things exactly the way you think that they should do it does not mean that we should be criticizing them.

    [/QUOTE]

    From now on I will start my posts saying "in my personal opinion".
    For example:
    In my personal opinion CDRF has been drifting away from its mission to find a cure to get people with SCI out of wheelchair. So I think I have the right to express my personal disappointment supported by the facts that I believe are rilevant.
    I did that directly with CDRF people, on their FB page and here on CC. I think I have use a rather respectfull words too, or at least that was my intention.
    I intend to keep doing so with all the SCI orgs.
    Then if you think my lenguage is inappropriate please let me know, I will correct it, but I think I have the right to point out facts that, in my personal opinion, are rilevant to get people out of wheelchair ASAP.

    Paolo
    Last edited by paolocipolla; 04-24-2011 at 02:38 PM.
    In God we trust; all others bring data. - Edwards Deming

  5. #25
    Quote Originally Posted by Wise Young View Post
    Why don't we criticize external factors and forces that have held back care, cure, and life for our community? For example, there were few voices raised on this site when the Governor of New jersey took away the spinal cord injury research money from traffic tickets.

    Nobody said anything when Congress failed to increase NIH funds for spinal cord injury research for the past decade. Many spinal cord injury laboratories have closed and yet there was not a word of protest. In fact, I heard a lot of ignorant criticism of NIH funded research.

    There was no outcry when Obama shoveled over a trillion dollars of stimulus for the United States economy and none of that went to clinical trials, improving care of people with disabilities, or providing infrastructure to improve accessibility.


    Wise.
    In my personal opinion, I agree with you, we have wonder WHY????

    I have been wondering WHY for some time... I have some possible answers, but I would like to hear yours first. Maybe during a relaxed dinner with a good bottle of wine if you like (that's an invitation ;-)).

    If I were living in the US, probably, I would have been arrested several times for "excess" of protest to support research to get people out of W/C, and I would be proud of it as letting people living paralized when a cure is possible is, in my personal opinion, like supporting phisical torture.

    Paolo
    Last edited by paolocipolla; 04-24-2011 at 02:40 PM.
    In God we trust; all others bring data. - Edwards Deming

  6. #26
    Quote Originally Posted by Wise Young View Post


    Look at what we are doing here on CareCure. People are attacking spinal cord injury organizations instead of the real culprits of our situation, i.e. the economy, the governments who have failed to allocate priority to care and cure of spinal cord injury, the lack of access and jobs for people with disabilities, the companies who refuse to invest in the field because it is considered to be a small market, and people who think that there is no hope, etc.
    In my personal opinion,
    SCI orgs have a great responsability because they speak in the name of people with SCI and they faild to take a strong and visible position to support the points you talk about here above.

    Paolo
    Last edited by paolocipolla; 04-24-2011 at 02:42 PM.
    In God we trust; all others bring data. - Edwards Deming

  7. #27
    Quote Originally Posted by Wise Young View Post

    It is so sad and so bad when we have Europeans criticizing American or Canadian organizations and vice versa. Do you really want Americans and Canadians to start attacking European spinal cord injury organizations? As you know, there is plenty of fault on all sides. It helps nobody. It has to stop.

    Wise.
    I would like to inform you and all the CC community that I have several Canadians, Europeans, Americans and people from other countries around the world that support my views, so I am not trying to divide the community, instead I am trying to devide "apples from oranges".
    BTW the Canadians are among my best friends.

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

  8. #28
    Quote Originally Posted by Wise Young View Post

    The HKSCIFund spent a HUGE amount of time and effort to support Rick Hansen and the 25th Anniversary of his Man-in-Motion tour. ChinaSCINet supports them. They support us. We work together. Isn't that the way it should be?

    Wise.
    In my personal opinion,

    I believe this is a good thing, I also believe I undersatd the idea behind this and I support it.

    ...but don't confuse the different environments... "peace and love" doesn't work in the same way in all the cultures, al the places, all the situations.............in my personal opinion and as I have learned from my university professors.

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

  9. #29
    - Paolo, just use the shortcut IMO instead of the whole ''in my pers...'' thing.

    That'll save you some time
    "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.

  10. #30
    Quote Originally Posted by Wise Young View Post

    Europeans criticizing American or Canadian organizations and vice versa. Do you really want Americans and Canadians to start attacking European spinal cord injury organizations?
    In my personal opinion,
    everybody is equally worthless if they are not trying to do something to get people out of wheelchairs.

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

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