ok. I'm being a little facetious. But seriously, what's wrong is that we with PD have the best and most creative ideas for addressing our needs at a high level, because of our sense of urgency, and because we are just an amazing group. But, although many of us used to be so high-functioning and able to get things done so efficiently once upon a time, we can't be in charge of organizations, anymore, because we have such ridiculously compromised executive functions! Those who are in charge and who don't have PD don't have that same sense of urgency, and operate at "normal" levels of viewing time, appropriate to those who expect a long life. Our condensed sense of Time gives us, I think, more compact and streamlined solutions to Big Problems, (esp. those which affect us, but not limited to those)

Those running big PD organizations, while often well-meaning and good people who do great work, don't seem to get that if they put us at high levels of creative input, feeding them our ideas,they'd get so much more done that would truly be helpful to our community! They'd be able to shave off all of the unnecessary, wasteful duplication of services, and cut to the important issues that need to be addressed.
Obviously, having one umbrella PD organization with a central web site would be the most useful idea of all; it could be one that was the initial place the newly diagnosed would go for resources, and provide links to all of the multiple services already available. Those would include links to sub-categories such as major PD organizations and their services; a list of advocacy organizations, like PAN, and sites like stemcellaction, etc; a category of e-newletters and snail-mail newsletters and list-serves like Neurotalk; links to clinical research sites; a category with a list of books, dvd's, for folks with PD; recommendations for complementary treatments and links to those sites; a category for support groups and conferences,etc.
So, let's create that! What do you all think? Leonore