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Thread: I want combo trials, and now!!

  1. #241
    55, Dr. Young's post clarifying CC's mission should bring the discussion about organizing CC's membership or using CC for advocacy to an end. Of course, anyone who wants to engage in advocacy for CDRPA funding, etc. should go for it, but Dr. Young's made it clear that CC is not the vehicle through which it should be done.

    My previous suggestion for how to use CC to organize in-district meetings with MOCs is withdrawn.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  2. #242
    You sound like a bunch of cry babies. No, there isn't a cure and it won't happening now. Do you think we will all stand in line, get a shot and walk away.

    The bigger question is, what are you doing to get ready for it if it comes. Trials may be coming,Wise gave some preliminary criteria that they will be using when selecting, are you working towards that goal? We have to be physically and mentally ready for anything that comes or doesn't come

    After reading Wise's"Mission statement for CC", there is no CC way when it comes to agendas. This site is for information only, any agendas torwards any goal is the sole responsibility of the members themselves.

    There was someone here saying we oldsters are just negative naysayers. We were told, when first injured, there would be no cure and to get on with what life you have left. So far, they have been right. I think part of the problem is that the new SCI's are being told that there will be a cure in ten years, maybe so. They've been saying that for 30 years. I know for me, there will be no cure. My age and length in a chair will be the deciding factors.

    I celebrate the advances we've made in technlogy, ER care, SCI specialties that keep us healthy until there is a cure. If not for these advances, many of us would be dead or in the least have a much more compromised lifestyle. It wasn't that long ago that the average life of a para was cut by 15 years and quads even more.

    I'm cheering for cure and do what I can to make it happen. But I won't be stamping my hands and crying I want to be cured now nor putting down others who think differently than me.

  3. #243
    I just read it too Hip. Thanks Wise, You da man. I fully agree.

  4. #244
    Senior Member
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    Well, I believe in numbers so I disagree with SCI55yrs on that account. There is a limit to how much many can do so the more the better, and the SCI community needs an identifiable, large constituency in my humble opinion. But maybe he is right and we are just going around in circles and it's time to see who wants to be in a group that supports cure efforts as best they reasonably can considering their health, responsibilities and other circumstances. Perhaps there will be a way to increase the membership of the group as we go on. We will have to figure out a way to do this without violating the purpose or intent of CC.

    Maybe we can do this on FaceBook somehow for the time being or set up a simple website in the near future.

    No sure whether everyone who wants "in" wants to post that or not. I guess anyone who wants "in" can either post it or PM me or do whatever else they feel comfortable doing. At least that way someone's failure to post cannot be interpreted as a failure to support the cure effort. If no one wants in, then at least we know more than we did a week ago.

    Thanks for your time.

    Steve

    PS: I'm "in."

  5. #245
    Wise will correct me if I'm wrong but I don't think he meant that CC can't be used for advocacy. He meant that advocacy is up to the members. It's not a function of CC, the mods or administrators. It's no good blaming lazy-butt mods (gawdamighty, Leif!) for what does or doesn't happen. They are each advocating in the way they personally see fit. It's not their CC job description.

    Advocacy on CC can be seen as kind of a fringe benny. It's not the mission, not at all. But CC is a place to meet ppl interested in w/chair basketball, support groups, books or advocacy, and that's ok.

    Most of the best advocates I know have come from CC...but they also come from everywhere. It's often the ones you least expect that have the fire. And the logical ones will disappoint you time and again.

    My advice is to not rely on CC as a base for advocacy b/c ppl get so fractious. I'd begun to hope that was just my rotten experience and others might have better luck, but now I think not. CC is a good place to find those interested; it's a concentrated bunch of sci's. It's a good place to disperse info e.g. "Working 2 Walk, November 2010, Phoenix AZ". But it's kind of hopeless to try to produce much advocacy work here. JMO.

  6. #246
    Quote Originally Posted by betheny View Post
    Wise will correct me if I'm wrong but I don't think he meant that CC can't be used for advocacy. He meant that advocacy is up to the members. It's not a function of CC, the mods or administrators.
    Agreed. CC members are free to advocate, rally, organize, etc., for whatever they wish, however, CC is not an advocacy organization.

  7. #247
    Quote Originally Posted by rdf View Post
    Your signature should be made into a sticky Sen, in the funding forum.
    Thanks for the suggestion RDF. I posted it in the CDRPA mega thread in Funding.

  8. #248
    Senior Member Schmeky's Avatar
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    Quote Originally Posted by Lynnifer
    I have written letters and had $10,000,000 along with members of the Rick Hansen Foundation donated for research in Ontario alone. Our federal government also donated $30,000,000 and I was a letter writer for that as well. I have written numerous letters to the editor (submitted to every major newspaper in Ontario) and had some newspaper stories to raise awareness a few times over the past 25yrs ... half of those years were spent working.
    Leif,

    This was being done long before you became an SCI advocate. Takes a real man to be disrespectful to a woman.

  9. #249
    Senior Member rdf's Avatar
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    Who are you talking to Patrick? It's not wise to use generalities.

    As to your self professed belief you're too old for a cure, consider how a partial cure (eg. regaining B&B control) could be effective for long time SCI.

    I've appreciated much of what you've posted at CC. I admire how you've lived your life, and how you seem a kind, considerate person. What I've quoted seems out of character, to say the least.
    Quote Originally Posted by Patrick Madsen View Post
    You sound like a bunch of cry babies. No, there isn't a cure and it won't happening now. Do you think we will all stand in line, get a shot and walk away.
    ...
    ...
    ...
    But I won't be stamping my hands and crying I want to be cured now nor putting down others who think differently than me.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  10. #250
    Senior Member rdf's Avatar
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    I saw that you'd posted it in that thread earlier, thanks Sen. It's an easy and quick way for the more laid back members to contact the Senator.
    Quote Originally Posted by antiquity View Post
    Thanks for the suggestion RDF. I posted it in the CDRPA mega thread in Funding.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

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