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08-09-2011, 09:35 PM | #1 | |||
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Another great initiative by Tom Isaacs in the UK:
http://www.parkinsonsmovement.com/ excerpt: (visit the website for the entire text) PARKINSON’S MOVEMENT is a new concept within the Parkinson’s community, based around the most important resource available — ourselves! Nobody understands Parkinson’s better than us, the patients. Nobody understands the condition, the treatments and their side effects better than those who live with it every day. And nobody knows what we want from future treatments better than us. We believe that Parkinson’s patients should take a bigger role in our own present and future treatment. And we will do this through knowledge, information and the sharing of collective experience. We need to learn about our condition, to manage it, to understand it and above all to take control of it. We need to fight ignorance and fear with knowledge and hope.
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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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08-10-2011, 10:08 AM | #2 | |||
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Tom is an icon for PD advocacy both here and in the UK. He is a brilliant writer and speaks with eloquence and knowledge. I believe the more we collaborate with other drug approval systems, the quicker we can experience "change."
Peg |
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"Thanks for this!" says: | lindylanka (08-10-2011) |
08-10-2011, 10:51 AM | #3 | ||
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In Remembrance
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Quote:
that there are more involved - Jon Stamford, Sara Riggare & Tom Isaacs for PARKINSON’S MOVEMENT
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | dilmar (08-11-2011) |
08-13-2011, 05:12 PM | #4 | ||
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I want to thank everybody in this thread for the appreciation you give to ** We value your opinions and want everyone who wants to engage in any way to share your views with us.
Sara PARKINSON'S MOVEMENT (I had a very nice link and a pretty Parkinson's Movement logo, but was not allowed to post either due to not enough previous posts... :-( ) |
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"Thanks for this!" says: | jeanb (08-13-2011) |
08-13-2011, 06:49 PM | #5 | |||
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Sara, my sincere apologies to you and Jon for not giving you credit in my initial post. As was pointed out I should have listed you as well!
http://www.parkinsonsmovement.com/ I hope all pwp will visit your website and join the movement! Best, 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. |
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08-14-2011, 08:56 AM | #6 | |||
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It appears to me that this is a great undertaking and worthy effort. However I do have a question or two. Once you gather enough knowledge, information and the sharing of collective experience, how do you get the medical community to take you serious and even acknowledge this effort? Is there really anything new being brought to the table here? I mean something significant enough to change the medical community's collective mind and change direction?
Please understand, I am not trying to be disruptive or negative in anyway. Just a honest question. In medical research and development of better drugs and treatments there has to be something significant enough to cause a change of direction.
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"You can't fight City Hall, but you can pee on the steps and run." --Gary North |
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08-15-2011, 01:44 AM | #7 | ||
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New Member
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Quote:
Sara |
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"Thanks for this!" says: | jeanb (08-15-2011) |
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