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Thread: W2W a few weeks later

  1. #31
    Quote Originally Posted by LetsGo View Post

    Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.
    I agree, then I suggest you may want to reconsider and correct you post.

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

  2. #32
    Quote Originally Posted by LetsGo View Post

    Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not conducting chronic research is disheartening.
    I want to thank Dr. Silver for having the courage to come here on CC and at W2W to say what he really thinks, even when it will cause him to have more enemies.
    I believe some hard confrontation can be very useful to move things forward in SCI research from where we are today.

    I want also to thank the other researchers who have done the same.

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

  3. #33
    Quote Originally Posted by LetsGo View Post

    Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit.
    For sure they are missing something so perhaps some hard words may cause positive changes..

    About Rick in particular you should know RH orgs process many millions every years but no-thing goes to regenerative research at the moment. Still they word "cure" is used to attract donations.

    Is that ok for you?

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

  4. #34
    Quote Originally Posted by LetsGo View Post

    Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world. They have helped lay out the foundation for the biology of the body so that new scientists can enter this field and not have to start the beginning. It is how science progresses for all diseases.
    Do you think the Miami Project is the best SCI research org we have?

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

  5. #35
    Quote Originally Posted by paolocipolla View Post
    Please tell me more about all this exciting research that dr. Perse is doing, I can't wait to hear more!

    and once again, please explain me why firs acute and then chronic?

    I don't get it. Let's do first chronic then we move on acute SCI.

    Paolo
    They need to be doing both concurrently. Acute and chronic sci are basically two different injuries that will require two different methods of treatment.

    Researchers cannot focus on chronic first then acutes because no treatment for chronic sci will ever be even close to as good as a treatment for acute sci. Not to mention, it might take 50 years before they fix chronic sci, if ever. It looks like an acute treatment may be here in the next decade or so. Sparing nerve connections seems to be infinitely easier than regenerating nerves in cns. Why would you purposely welcome a new patient into the hell that is chronic sci, when it could have been prevented with an acute treatment?

    On the other hand, the current situation of focusing on acute sci only is wrong too; especially the deception that goes on where chronic sci are duped into believing they are next to be focused on in research labs. I don't see why anyone with a chronic injury would ever donate to labs that are not currently focusing on chronic sci.

  6. #36
    Quote Originally Posted by LetsGo View Post

    I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.
    If they are doing so good as you say they have a big problem of communication at the Miami Project.

    Then about researchers, if thay can't face criticism i.e. explain they are doing the best possible thing to find a cure ASAP it is OK for me if thay move to another field.
    This is tough job for tough & smart people, possibly also heart driven.

    Many SCI researchers I met do not qualfy for the job IMO. Unfortunatly I am not in a position to hire & fire researchers.

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

  7. #37
    LetsGo, lets talk about all that.

    You can find me on skype or on FB or just PM me.

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

  8. #38
    Quote Originally Posted by LetsGo View Post
    I undestand your frustration. But everyone needs to stop focusing on how long it is going to take. The truth is no one knows. It might be next year or it could be 10 years. Isn't it better to look at how can we move the field foward the fastest? I'm HIV+, so while its not the same as being paralyzed by any means, I can understand the frustrations that go with a time frame.
    The truth is that if we don't start putting chronic SCI first a cure for us will never happen for chronic SCI, but they want as to donate, do foundraising, lobby etc..
    Sorry I have been screwd long enough!

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

  9. #39
    Quote Originally Posted by Jim View Post
    Thank you for this LetsGo.
    Could you be more clear Jim?

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

  10. #40
    Quote Originally Posted by Christopher Paddon View Post
    I mean that W2W's purpose should be to make itself redundant as soon as possible by finding a cure

    It should not perpetuate itself into a neverending series of rallies that exists for its own sake (which many of us think some charities do)
    Chris,

    I can tell you that for me one of the main goal of W2W was to come back home with a lot of things to do to make a cure happen. W2W is a learning experience that helps you understanding what you can do once you go back hope.
    Still it remains hard to figure out what the best thing to do is, but for sure the more we learn the more chances we have to help in the right direction and also to stop working in the wrong direction.

    I am afraid LetsGo has something to say here.. LOL!

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

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