[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

[reverett123]

....the next tier down? Smaller groups struggling to stay alive? Enlist a half dozen of them into an alliance and then approach one of the more likely top tier with a proposition. Core requirement would be that a majority of the Board of Directors be PWP.

[chasmo]

but there are a lot of non-PDer's living "high on the hog" at our expense. There is one well known organization that has 40% of its money going to "overhead". This is millions being spent to support 3-4 people. This is unconscienable!!

Charlie

[paula_w]

Rick,

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, it depends on who the group is who is appealing for help - if it's not a popular one, the group will be ignored.

Just think on this a moment - none of the PD orgs acknowledge Monkeys in the Middle - who are they afraid of offending?

The orgs are changing and becoming more patient oriented. But you can see by what they ask of patients that they don't completely understand the illness. And gobs of their money also comes from pharmas and biotechs.

paula