new kind of patient advocacy group forming?
 

Hi everyone,
Times change. When I was first diagnosed, they didn't think there could be any kind of regeneration possible in the brain. Not to belittle efforts made in the past, but it seems like discussions of late have revealed quite a few people wanting and ready for something different than what we have had already. Should we do this?

How should we go about it? Start with a core group and invite others down the line? Should all those interested retire to some private form of group communication so that we can hammer out our ideas or figure out what we want to do before we go public with it?

What do you think?

look at what you stumble into just browsing here tonight...energy?.

Fiona, will get back to you but my first thought is thank you for asking.

paula

[Fiona,
thanks/
"How should we go about it? Start with a core group and invite others down the line? Should all those interested retire to some private form of group communication so that we can hammer out our ideas or figure out what we want to do before we go public with it?

YES we should go on, and thinking about the ways to be productive. more later, just took mirapex.........

Girija

I vote for the core group approach. Once we have our act together we can trot it out on the stage to see how the crowd reacts, but right now we need to focus on our view of the problem.

I agree with Rick. The best way is to form a core group or "committee" that can get things organized first. The committee members could even setup a charter so that the group can remain focused on goals rather than run ad hoc, which happens many times a group has been created. This not to say that a brain-storming session isn't out of the scene, nor are future changes not allowed once the charter is setup.

This is something I learned when working with my online classes. I had to participate with teams during each class. We were given projects that we had to complete as a group. Some members participated more than others, and some seemed to take over the group to run it themselves.

With members spread worldwide, this can become a hassle for communication. One of the things I did learn from the online experience is that having a single meeting place, in my classroom it was the online team folder, to hold virtual meetings, and exchange ideas.
The reason for the online meeting place was so no one was left out of the idea process.

Once the intial group is setup, then you can present it to the public. With your framework in place, you'll have something to hold on to and build on frome the base.

I hope this helps.

John

IMHO Sort of Like ...
 

Sort of Like ...

Sort of like a national PD organization restricting access for patients untill they want that access to be used on their terms.

Every bit of fragmentation whether through too many national orgs, too many individual web sites, too many groups, too many back rooms causes a weakening of the community no matter how well intentioned.....

Say it in public.

take care ,,, ken

I hate to sound defeatist, but........
 

We've "been there, done that"
we'll talk it to death.
We need to DO it, NOT talk about it.

I agree. Back room. Aliases. Forged documents. The works.

start with some action
 

just a suggestion and i think i'm too tired for anything but an occasional suggestion. could you organize 'events' instead of an org that forms but never quite gets to the events? not to say that this new one would be that way. but an event might attract people and maybe even from there you could organize more?

2 cents.
paula

Um, I don't know how much energy any of us have really. I was just suggesting it because recent discussions seemed to indicate a vacuum of some kind.

I'm for doing things too, but even in recent threads there have been different ideas of what to do. My thought would be to focus on one or two or three definable projects, and with a clear and do-able plan of action.

I also suggested that we talk not in public in our initial discussions - although any one who wanted to contribute could - well, we still do have freedom of association, at least in the US, and if we're not being funded by any entity, we have a right to have any conversation we want to privately. The PD community is not all on the same page. Maybe our group could accomodate every possible point of view, but I don't know that yet.

I also think I don't want to have these initial discussions with endless shadowy lurkers right at the beginning...

those are my initial responses, more to come.