[Todd]

I continue to wonder why the PD community (Fox, NPF, APDA, PDF, etc.) can't get their act together and create something like this:

http://www.youtube.com/watch?v=atKVaG4nIVo

We've got to change the thinking from "me" to "we". What's it going to take?

[indigogo]

Todd - I couldn't agree more.

To everyone: What are your feelings about the fractured PD establishment? We have 7 (PDF, NPF, APDA, MJFF, PAN, Parkinson's Alliance, Parkinson's Institute) different organizations competing for money for research; they don't collaborate; they each have their own administrative overhead.

Do you think unity is a cause worth pursuing?

Your comments will be taken seriously, and will end up in the right hands.

Thank you!

[pegleg]

AMEN, Todd! It's been a while; I'll be anxious to see you in Atlanta and catch up on what's you've been doing.

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, ONE Alzheimer's Association, ONE Diabetes Association, etc. And I don't care what the PD orgs say, they ARE competing against each other.

So what do we do? I try to do something for all of the orgs, but that really stretches me and isn't really fair to anyone, including me.

I think this is where we need to put our "patient power." But how???

Peg

[pegleg]

Carey

I hit "send" just as you posted.

It scares me how much we think alike!

Peg

[jeanb]

Todd, Carey, Peg, and all,

Todd - what a great video!!!

Yes this fractured PD establishment only hurts us.

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, I stepped on many organizational "toes" because some were offended that I said that Pwp didn't have their own symbol. Well did we? If we did then, I sure didn't know about it. But I hope we do now.

http://www.youtube.com/watch?v=TkGRzsxnUzQ

And all I was trying to do was say: Let's work together. Let's use this symbol to represent us ALL. Let's set aside these arbitrary boundaries.

So whatever I can do to remedy this situation - sign me up! Let me know what I can do. ENOUGH! We need to work together.

And Carey, in addition to the 7 national orgs, Arizona has 4 state PD orgs. And how many in California? Or Washington? Sheesh!

[reverett123]

...of the national orgs and would like to ask what each is like. Organizations tend to become hidebound and self-perpetuating. I have no wish to take part in that. But sometimes they are lean and hungry and, even, aggressive.

So, tell me- Which ones are willing to upset apple carts? Which are oriented toward YOPD? If you want, you can PM me and I will just report the general flow in an anonymous manner.

[paula_w]

I would answer that one privately [just speaking for myself tho] but I'm so glad to see this thread. Thank you Todd. Not only do they compete; they treat patients like high school and the brown nosers get the most reward. Some exclude regular patients completely and they DO NOT KNOW THE FACTS about the illness.

And the money? ........................... I'm not naming, those who do it will know who they are.

paula

[leonore]

That was a wonderful video. Very inspiring. Thanks, Jean.
You all, with this dialogue, are giving me a much-needed "on-switch" during a really rough week. best, Leonore

ps Someone please help me get my picture up with my name. I reduced the size and pixels and still..nothing!
[QUOTE=jeanb;336305]Todd, Carey, Peg, and all,

Todd - what a great video!!!

Yes this fractured PD establishment only hurts us.

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, I stepped on many organizational "toes" because some were offended that I said that Pwp didn't have their own symbol. Well did we? If we did then, I sure didn't know about it. But I hope we do now.

[Curious]

i can help you with the picture leonore. i'll pm you.

[leonore]

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