deltadarlin wrote on Jul 9th, 2009 at 8:32am:There are some good suggestions here, BUT, there are still only a few people participating in this thread! Surely there are more OUCH members here (or potential OUCH members) who would like to make suggestions?
Anything new? Anything positive?
Carolyn dearheart, you sure are nagging on this issue.

Ok. I will end eventually with what will be only a suggestion. However, there has been some discussion on the other thread I'll labor to death first in order to show appreciation for the accumulated contributions this discussion has been through in order to possibly contribute. I posted there but this is fairly contriving and I've quoted out of context in some cases for the words that were used. I think and hope though for the instances to be harmless.
Originally finding Bob P's remarks a good starting point
Bob P wrote on Jul 2nd, 2009 at 11:09am:Perhaps pick one pet project and work only on that.
Kinda nice to have an open forum like this to discuss it in.
and then mentioning Michael's use of focus
wildhaus wrote on Jul 6th, 2009 at 10:46am:we need to focus at the moment...
I tried to make reference to a unified focus in some way, but wish to include the ladder steps inbetween to expand with a further effort.
Marc steps a bit further mentioning a narrower focus perhaps, but adds involvement with it, which has also been discussed. Two good points so far.
Marc wrote on Jul 2nd, 2009 at 8:43pm:In order to get serious involvement from members, you have to make them feel involved.
One strong leader, with a narrowly focused initial goal could bring 'er back to life in 6 months.
Chris here again takes Bob's original thought, being now Marc's comment about a focus being narrrow, but Chris adds team and working together.
purpleydog wrote on Jul 2nd, 2009 at 11:41pm:I believe it will take a narrowly focused, motivated team, with a strong leader, to make it work. A team that is willing to make the time and work together.
It does appear OUCH is in a stagnant state.
I will get back to stagnant state. Anyway, so now we have narrower focus, involvement, team, and working together. Doesn't sound bad at all. Combining all, it may be all similar to aftermentioned unified focus, I don't know, I just make sh*t up. Well though, but how to attain this narrower focus, involvement, team, and working together?
Michael here adds an initiative. With an added inititative, see what happens -- collaboration, achievement, development, involvement, attention, leading onward, results, a sponsor and funding.
wildhaus wrote on Jul 3rd, 2009 at 9:30am:I have been ... for a short time as a member of the OUCH Board of Directors and an active collaborator in some very significant initiatives and achievements.
These initiatives ... resulted in development
good people were actively involved
attracted the attention
This led to ... followed rapidly by another collaborative effort
invited to attend
That meeting resulted ... to benefit cluster headache sufferers all over the world.
As members of OUCH we made this happen.
securing ... a sponsor providing funding to both OUCH and CH.com.
securing support and funding
Again, all this happened while we were active members of the OUCH BoD.
I believe we need OUCH! I also know it takes a 100% team effort to attain the kind of goals that makes OUCH so important to all of us.
It seems an initiative, perhaps an idea is an essential part of the rest having the possibility of falling into place, building all the other things added in the discussion so far, altogether I guess I've shortened to try to include them all in unified focus for convenience.
It may be that an initiative or idea can be formed from research or a creative process, and both of course. If though, we were to be ourselves without research money and facilities, there might be more of a dependence upon a creative process, which has moments that may come and go. That well can go dry for awhile, and here's where I'll come back to stagnant state.
Combining creative and medical can be a very hard direction not easily attainable, some of our most creative can throw up their hands in that area. Carl here can do wonders creatively, but damn if he isn't just being frank with admitting this one.
Carl D wrote on Jul 3rd, 2009 at 2:11pm:I can't say this is 'the plan' as I have not a clue myself,
Another honest one arrives soonafter.
FramCire wrote on Jul 3rd, 2009 at 4:07pm:I have no ideas on what to do with OUCh,
focus on the best interest of the group.
Anyway, thats all I got.
Yet still we seek, searching.
catlind wrote on Jul 3rd, 2009 at 3:30pm:the future of OUCH ... I would think that there are other potential solutions for engaging...
Searching, not quitting.
We may have said once, "I don't know what I want to be when I grow up, " but still we subsist, live. Time and looking, opportunity may arise can we still be there when it does?
If a stagnant state exists, that may not mean the end of things. Ideas may happen, they may not. So ok, can we live to fight another battle, another day?
Here Barb gives us a starter. What did they do back in the dinosaur days anyway?
BarbaraD wrote on Jul 2nd, 2009 at 9:36am:The "original" purpose was to get Clusterheadaches KNOWN as a disease and make doctors aware that we were suffering. To get some research started on finding a cause thus coming closer to a cure.
A lot of work went into making it a nonprofit and legalities HAD to be aherred to (whether we liked it or not). The ball fell to a "few" people to do most of the work and take the "criticism" of the rest.
Members were involved in the beginning and Bob P had a website where everyone could have a say (whether you agreed or not, but everyone had a say in everything). I remember a LOT being accomplished - Letters to employers, research to take to doctors, O2 research - for all to print and read. This was posted on ch.com as well as our OUCH website.
We gave support to each other and conventions were something to look forward to - just meeting another Clusterhead was something we all looked forward to doing.
Ideas were thrown out freely and some of them stuck. A doctor list (which still is in existence today) was suggested and posted almost immediately. A lot of good ideas came from OUCH that are still here today.
My personal opinion - OUCH is still a good organization, but needs to go back to its roots and undergo some reorganization and remember it's original purpose. It's members are its backbone and they need to be involved and informed.
Well, look at that. They threw ideas around freely. There's a starter. I'll bet people got behind a few of them.
From a popular saying, I think: "Build it and they will come." With a right idea, motivated involvement can happen.
Here looks like some resistance to saying OUCH isn't seaworthy. I'd say that's involvement.
seaworthy wrote on Jul 3rd, 2009 at 5:41pm:OUCH started in a garage. Wasn't last years speaker Prof. Goadsby?
Think what a good initiative or idea could do to raise the tide. And here's a thought:
wildhaus wrote on Jul 5th, 2009 at 6:41am:uncomfortable as it is, a discussion is a welcome thing.... and most likely productive, it might even fruit some good ideas..... how and what to do with OUCH!
I do thank Chuck for bringing this up on the Boards...
I do, too.
seaworthy wrote on Jul 5th, 2009 at 1:01pm:...the kitchen is stagnate because no one has anything cooking.
Downsizing is not always a bad thing.
What's cookin'? It could be the turnip winter.
Racer1_NC wrote on Jul 5th, 2009 at 1:33pm:... didn't see a large healthcare concern ... offering ... to assist in the care of it's citizens.
In a way, much the same situation that may have started ch.com. Sharing ideas and finding our own way through this. Then came OUCH, Barb's quote.
catlind wrote on Jul 5th, 2009 at 5:40pm:What is needed is constructive effective discussion on how to allow participation of the greatest numbers of members in the upcoming discussions for OUCH and it's future.
... ideas for the best interest of the organization and the members who benefit from their work is needed
andrewjb wrote on Jul 5th, 2009 at 6:20pm:Hear, hear.

.
Yep, I liked it too, Andrew.
deltadarlin wrote on Jul 6th, 2009 at 8:43am:Cannot solve a problem until the problem itself is recognized.
I found this interesting because I figure, where are these ideas to come from that might be absorbing, instill involvement, maybe unified focus, which brought me full circle back to Michael, more fully expanding Bob's thought.
wildhaus wrote on Jul 6th, 2009 at 10:46am:we need to focus at the moment, not much time left..... to look
what do we as members would like to see in OUCH...
once we have formatted some Ideas...
I contacted Mike (Gator) twice in the past about the site, he accommodated a request to change something, then helpfully replied a second time, but access problems deter some from the site. I cannot address that.
But here is my suggestion. A member message board is created for ideas. Any sensible ideas can be submitted to OUCH and will posted by them to its own thread on this open OUCH message board to be openly read by all members. Comments and discussion may follow, moderated, pm's may flow between people about certain ideas, level of interest might be posted. Two or three people may share just enough interest to take a stab at the idea. Initiatives started, progress posted, obstacles noted, help wanted signs hung out. It's possible more interest may be attracted through seeing initial collaboration. A kind of "anyone can do it punk rock" inviting atmosphere, things can start at a simple level, some threads more involving, yet interesting to watch happen.
No ideas may be posted maybe, no responses to ideas. Ideas may get started and peter out, who knows, someone may pick up the ball again later. It would be an open avenue for whims, even some good ideas, members who are medical professionals may chime in with a steering hand. But it must be seen and accessable by all members, an open sharing by all members, a visiting place.
It could totally flop, but it's there for anyone, anytime, like the old coffeehouse intermingling hangout sessions where many, many ideas were born and discussed centuries ago.
That's all I got.