AMEN,
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You know why we can’t do something like that cancer video and it be successful. I think it’s bewcause there are too many organizations. there is ONE Cancer Society,
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It has been so hard just promoting Karen Painter’s PD Tulip for awareness for Parkinson’s! When I made the youtube video for the Tulip,
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So whatever I can do to remedy this situation sign me up,
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And ,
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I imagine some will race to answer this one or else run the other way. The orgs are caught in the middle of a changing world where patients were largely excluded. Their boards can tie their hands. Once again,
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Just think on this a moment none of the PD orgs acknowledge Monkeys in the Middle who are they afraid of offending,
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The orgs are changing and becoming more patient oriented,
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Jean you are kidding me that some people got upset about your tulip stuff,
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and I do a lot with PD advocacy but DO NOT consider myself a brown noser (I looked in the mirror this morning no sign) lol,
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Everett I don’t think going with "the one who would most support YOPD" is the best way. That would fracture us even more. I think there is surely ONE group that could offer support for PWP no matter what their age. Neither would be wise for the majority of the board of directors be PWP. ; I’m afraid nothing would get done. And honestly,
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A few years back there WAS an effort to merge the PDF (New York) and the NPF (Florida) into one big org. That would have made one powerful group who would be able to tackle about anything. But alas,
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But seriously,
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07 31 2008,
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How about an independent board of PWP who rate the organizations based on defined criteria and publicize the results annually and to the hilt,
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Some criteria Money raised,
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07 31 2008,
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Actually,
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It raises him approx 10+ k a year [someone holler if i am wrong] and he could use a lot more help,
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I’ve been giving this a lot of thought and will seek sponsorship for it,
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07 31 2008,
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How about an independent board of PWP who rate the organizations based on defined criteria and publicize the results annually and to the hilt,
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Some criteria Money raised,
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Rick I’ve been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now,
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