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08-19-2008, 06:37 PM | #1 | |||
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I have copied Todd's 2 most recent posts here because maybe his vision needs a separate thread.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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08-20-2008, 05:50 PM | #2 | |||
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Magnate
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I agree with Todd wholeheartedly! I have tried to say the same, in a different way, but fell on deaf ears...or so it seemed to me.
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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08-20-2008, 06:10 PM | #3 | |||
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Oh I don't know about all of that Carolyn. If the people with the disease don't want the current organizations representing them unless they unify into one main organization, that would pretty much put them out of business. It would take all of us to strongly voice our opinion every chance we got. The people that run the current organizations are just going to have to get down off the high horse and accept the fact they are getting nowhere by themselves. It's high time there is only one Parkinson organization in this country and all of our voices are louder than their one voice. GregD
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08-20-2008, 06:32 PM | #4 | |||
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Senior Member
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Maybe I have misunderstood Carolyn & Greg. I don't think this is about the orgs joining. I think it's about them working together for the greater good - for awareness:
Quote from Todd: I still strongly believe that the first positive step in the right direction is for us to push the orgs to come together and create a unified public marketing campaign to create much needed exposure for our disease. With increased public awareness comes increased public support, both financially and politically, and that benefits everyone involved. They certainly could work together to create a unified marketing campaign like that amazing cancer ad. And they should Jean
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. Last edited by jeanb; 08-20-2008 at 06:32 PM. Reason: emphasis |
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08-20-2008, 07:04 PM | #5 | ||
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Yappiest Elder Member
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( idea: gather the data bases and spread the word. the awareness. give the orgs public service announcements of what you have done and what is in the works.)
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08-20-2008, 07:34 PM | #6 | |||
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An independent group as liaison - pwp not tied to or funded by the orgs.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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08-20-2008, 07:41 PM | #7 | |||
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Senior Member
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posted by jeanb:
"An independent group as liaison - pwp not tied to or funded by the orgs." that's the point of the organizing we're doing on the other thread - a unified patient voice to wield influence. I think that needs to happen before what Todd is asking can happen. we're talking in circles!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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08-20-2008, 08:01 PM | #8 | |||
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Carey you are right of course.
But the BIG thread had grown & encompassed so many other ideas! And in writing this - referring back to Todd's posts - maybe we're straying from his vision again. Not a bad thing - and as you and Sheryl have written before, there are so many directions to take! It's energizing and exciting - to see where we will go with all of the ideas.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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08-20-2008, 08:13 PM | #9 | |||
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we need to organize and make some noise, then the orgs will either be with us or under our wheels.........
This whole thread has been talked to death. We can do ALL the things we have discussed here, its a question if we want to! I want to get organized and get the NIH to fund the research we need to do to find a cure for this damned disease. This is not rocket science folks!! Let organize and get to work!! Organizing is the FIRST thing we have to do or everything else is a moot point!! Charlie |
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"Thanks for this!" says: | Curious (08-20-2008) |
08-20-2008, 08:19 PM | #10 | |||
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Senior Member
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JeanB posted:
"But the BIG thread had grown & encompassed so many other ideas! And in writing this - referring back to Todd's posts - maybe we're straying from his vision again." the thread may be big, but the idea we've arrived at is as targeted as a laser: an independent voice for the patient, plain and simple. I guess I should post that on the other thread. All of the stuff that has been posted on the other thread, as far as I am concerned, are only REASONS why we need an independent voice, not projects we are going to pursue. If other want to pursue a scientific database, or Perry wants a voice for PPP, we can link to them in support. But the only thing that is being created is a unified voice. BINGO: What Charlie said: "Organizing is the FIRST thing we have to do or everything else is a moot point!!"
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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