[myownarcadia]

Since the ancient Greek society models until nowadays, organizing a group of people to run a town or a little state or a nation, it was a matter of trust.

We can (have to) discuss and agree the common target and goals as much as needed.

But once agreed those goals, to switch from definition to realization mode, we must delegate the executions to those people with the more appropriate skills, energy, time available, to run each specific task.

Sorry if this could sound a very pragmatical approach, but elsewhere we'll get "burned" in the never ending quest for the "golden rule".

At the end of the day, you have to decide in what (who) you trust.

Time will tell if you were right or wrong....... that's life, isn't it?

Fulvio

Nothing is for sure except death and taxes and people's attempt to cheat both

[paula_w]

comment deleted to which this was replied.

[Splanton]

I began to wonder jst what's out there, in terms of "project management", Patient advocacy", and PD, simply because these seemed likely terms to describe many or most of the previous conversations in this thread; I can't post URLs here, but here's a simple search that can be "cut and pasted" into Yahoo, Google, etc. to show a few examples/potential "models" for proceeding:

patient advocacy AND "project design" AND nonprofit* AND Parkinson*

Stan

[paula_w]

Posting link for Splanton to all:
In terms of organizational theories, what I see happening here is a form of "project design" as various parties combine ideas of what might be done, what could be done, and what shold be done with available resources.

While it's "not PD", CARE has a pretty good handbook on how to design projects that help people, and it's online-it's a fairly large .pdf file (170+ pp), and can be accessed at:

http://www.ewb-international.org/pdf...20Handbook.pdf

Stan

[jeanb]

That's fine. i'll wait for consensus.

Originally Posted by paula_w

The assumption that anyone will handle anything is premature and administration of anything must be a group decision. We are in the beginning stages, and have agreed to not go with anyone's preconceived agendas. A few people posting on a forum cannot assume anything or make decisions for a group that isn't formed or a message that is not formed. The stamp and postage stamp are separate agendas. People who signed for them may not agree at all about forming independent patient groups.

Doc John has made an offer that comes from a non-pd and unbiased entity. Yes, a database that already has 3,000 names should be on the table. But it was collected for different reasons, albeit those with good intentions. So trust will have to work both ways here, including group decision making and concensus.

paula

[indigogo]

It comes as no surprise that divisions within our own community may not be as numerous, but they are just as deep as those between the orgs.

Just to let you know how I am thinking, I believe this advocacy database gives us the opportunity to break old habits.

I think we need to seriously consider Doc John's offer. I in no way interpreted it to mean he would give us his data, only that he would help us set up our operation.

Reasons to consider his offer:

1. Because it is a neutral base where all "owners" already feel comfortable.

2. It is already established as a place beneficial to patients in an empowering way with lots of support. Doc John believes in us and understands the importance.

3. It is known world wide; would be an authoritative and credible source of legitimacy if it was known that NeuroTalk was helping.

4. SOMEBODY OTHER THAN THE PD ORGS ACTUALLY OFFERED SERVICES AND MONEY. This deserves all the attention we can bring to it.

I don't think it is possible to go forward unless everyone is able to start fresh with no personal agendas. Believe me, I've been getting emails and calls from all quarters already. Time to work together, folks.

[Jaye]

...on all points.
J.

[SherylJ]

QUOTE=indigogo;341830] It comes as no surprise that divisions within our own community may not be as numerous, but they are just as deep as those between the orgs.


I think I can speak for Jean as well as myself when I say we volunteered our efforts in good faith. We are "just do it" (to borrow Nike's tag line) people, which is in large part why we have accomplished so much as quickly as we have in terms of our own initiatives.

Doc John's offer is very generous indeed and if the group chooses to go that route, so be it. Neither my husband nor I are short of pro bono jobs.

I admit, however, that I don't understand many of the issues raised. Obviously there are personal agendas at work, though no one will admit these agendas are their's. So let's just keep posting and see what we accomplish.

sheryl

[paula_w]

Sheryl - your efforts are still needed. This is potentially the most transparent thread on the internet....it would be pretty hard to hide an agenda. Doc John has offered the pd patient community a platform. There is no agenda yet; it's forming.

paula

[Splanton]

Originally Posted by jeanb

That's fine. i'll wait for consensus.

Your Margaret Mead tag line struck a chord in my memory:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. Margaret Mead

reminded me of the CSN&Y anthem:

Though your brother's bound and gagged
And they've chained him to a chair
Won't you please come to Chicago
Just to sing
In a land that's known as freedom
How can such a thing be fair
Won't you plaese come to Chicago
For the help we can bring
We can change the world -
Re-arrange the world
It's dying - to get better
Politicians sit yourself down,
There's nothing for you here
Won't you please come to Chicago
For a ride
Don't ask Jack to help you
Cause he'll turn the other ear
Won't you please come to Chicago
Or else join the other side
We can change the world -
Re-arrange the world
It's dying - if you believe in justice
It's dying - and if you believe in freedom
It's dying - let a man live his own life
It's dying - rules and regulations, who needs them
Open up the door
Somehow people must be free
I hope the day comes soon
Won't you please come to Chicago
Show your face
From the bottom to the ocean
To the mountains of the moon
Won't you please come to Chicago
No one else can take your place
We can change the world -
Re-arrange the world
It's dying - if you believe in justice
It's dying - and if you believe in freedom
It's dying - let a man live it's own life
It's dying - rules and regulations, who needs them
Open up the door
We can change the world