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Suggestions for OUCH (Read 5996 times)
deltadarlin
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Re: Suggestions for OUCH
Reply #25 - Jul 9th, 2009 at 8:32am
 
Brew wrote on Jul 8th, 2009 at 8:27pm:
BarbaraD wrote on Jul 8th, 2009 at 6:55pm:
And a little known fact -- should an IRS audit occur -the Treasurer can be held personally liable as well as the organization.

That right there is enough to keep most people away from that job. Especially since the pay is zilch.



Ain't that the truth?  This is a volunteer organization.  Not only that, the members and BoD are spread all over the country/world.  It's not like they can all get together at the Waffle House for meetings.  I don't know about all, but I do know that some of the BoD have devoted themselves to seeing that OUCH remain a viable organization. 

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?
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Re: Suggestions for OUCH
Reply #26 - Jul 9th, 2009 at 9:44am
 
I really don't have any other suggestions other than some sort of dues.

There not only has to be accountability for BOD but for members.

People will always bitch and moan but to have a true voice and feel for an organization there has to be more than hope and dreams of a vision being fulfilled.

This really reminds me of the times as an active member in my fraternity...Dues were mandatory for survival yet some didn't pay yet bitched and moaned and nothing changed until we revoaked voting privaledges, access to parties, etc. This changed things as there was accountability and these were things that people wanted. People also held positions that were vital for the organization but if jobs weren't done there was an accountability system.

The reality is that despite serving thousands OUCH remains grassroots much like a fraternity and there will always be a small group doing the thankless work for many regardless of everyone who is a member reaping the benefits.

There needs to be accountability for both this will diminish bitching and help motivate those who really want to be a part of something significant.

My humble opinion....hope the example made sense as it seemed to in my exhausted noggin

Eric
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Re: Suggestions for OUCH
Reply #27 - Jul 9th, 2009 at 9:50am
 
I really don't have any other suggestions other than some sort of dues.

There not only has to be accountability for BOD but for members.

People will always bitch and moan but to have a true voice and feel for an organization there has to be more than hope and dreams of a vision being fulfilled.

This really reminds me of the times as an active member in my fraternity...Dues were mandatory for survival yet some didn't pay yet bitched and moaned and nothing changed until we revoaked voting privaledges, access to parties, etc. This changed things as there was accountability and these were things that people wanted. People also held positions that were vital for the organization but if jobs weren't done there was an accountability system.

The reality is that despite serving thousands OUCH remains grassroots much like a fraternity and there will always be a small group doing the thankless work for many regardless of everyone who is a member reaping the benefits.

There needs to be accountability for both this will diminish bitching and help motivate those who really want to be a part of something significant.

My humble opinion....hope the example made sense as it seemed to in my exhausted noggin

Eric
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deltadarlin
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Re: Suggestions for OUCH
Reply #28 - Jul 9th, 2009 at 5:31pm
 
Eric,
Your opinion is so good that it's double posted  Wink.  And you are right about the few serving the many (this occured with the ham radio club that I was a member of~we would send out e-mails and letters about the members needing to be there for a special vote, well in advance and they would still not show up).

How many people on this thread are ready and willing to volunteer to do something to help OUCH, rather than sitting around pissing and moaning about the way things are?  I've already said that I am, so what about you?
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Re: Suggestions for OUCH
Reply #29 - Jul 9th, 2009 at 5:39pm
 
deltadarlin wrote on Jul 9th, 2009 at 5:31pm:
How many people on this thread are ready and willing to volunteer to do something to help OUCH, rather than sitting around pissing and moaning about the way things are?  I've already said that I am, so what about you?

Don't take this the wrong way, but not me. I'm being as honest as I can about it. My life is full to the brim with interesting, fun, mundane, depressing, and dutiful things to do. I'll continue to be a member, I may even provide an idea or two, but I just don't have any more room - especially when doing so would make me the target of heaps of criticism.
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Re: Suggestions for OUCH
Reply #30 - Jul 9th, 2009 at 5:58pm
 
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.  Wink

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?   Wink

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. Smiley.


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.






 






 

















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Re: Suggestions for OUCH
Reply #31 - Jul 9th, 2009 at 6:43pm
 
Kevin, (you know I love ya dearly) as usual  I have a hard time reading what you're trying to say.   I am certain it is just me being blonde and all.

I do believe this is a great thread as ONE (1) person who has something to say, as well as ideas... has stepped up to the plate to help OUCH. To be on the BoD to make things better. To change things.

Did I mention one?


     Yee-haw!!!!!!!!!!
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Re: Suggestions for OUCH
Reply #32 - Jul 9th, 2009 at 7:10pm
 
Brew wrote on Jul 9th, 2009 at 5:39pm:
deltadarlin wrote on Jul 9th, 2009 at 5:31pm:
How many people on this thread are ready and willing to volunteer to do something to help OUCH, rather than sitting around pissing and moaning about the way things are?  I've already said that I am, so what about you?

.......................................... but I just don't have any more room - especially when doing so would make me the target of heaps of criticism.



I have a feeling that this problem is about to become a non-issue. We are seeing very solid positive input (along with a bit of natural venting)

I believe that it was Kevin that I saw first use the word "Unified" - that's exactly what this thread is helping to do.

Brew - go ahead and tell me that you wouldn't help out at least a little bit in a solid, enjoyable atmosphere with "unified" team work in play.

Yours truly would be happy to do so.

It's actually up to us - not "them" because we can become "them".

Respectfully,
Marc
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Re: Suggestions for OUCH
Reply #33 - Jul 9th, 2009 at 7:37pm
 
Quote:
Yours truly would be happy to do so.


Oh be still my heart.  Marc, are you actually saying what I think you're saying.?????


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Re: Suggestions for OUCH
Reply #34 - Jul 9th, 2009 at 7:56pm
 
Quote:
Brew - go ahead and tell me that you wouldn't help out at least a little bit in a solid, enjoyable atmosphere with "unified" team work in play.


Sorry, Marc, but no.
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Re: Suggestions for OUCH
Reply #35 - Jul 9th, 2009 at 8:05pm
 
(I can't believe I am going to say this!)


I would be more than happy to get involved, and be on the BoD, again, IF I knew that I would not be beating my head against the wall (again) about making the operation less secret, and more open to the membership.

We MUST have an open area for the members to voice their opinions, NOT a closed, secret message to the "powers that be" that no one ever hears about.

Close it down so that the general public can't see it, but the place HAS to be accessible to the membership!  Just look at the input on this and the other thread!  This has NOT been available to members for YEARS!

Chuck
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Re: Suggestions for OUCH
Reply #36 - Jul 9th, 2009 at 8:39pm
 
I'm smack dab in the middle od a prednisone taper. Did someone say waffle house?
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Re: Suggestions for OUCH
Reply #37 - Jul 9th, 2009 at 8:54pm
 
seaworthy wrote on Jul 9th, 2009 at 8:39pm:
I'm smack dab in the middle od a prednisone taper. Did someone say waffle house?

With strawberries and whipped cream, and loads of crispy bacon on the side. And don't forget the fresh, hot coffee and orange juice.

One of God's best meals of all time.
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Re: Suggestions for OUCH
Reply #38 - Jul 9th, 2009 at 9:02pm
 
As soon as I finish off this 1/2 dozen frozen bait fish I've had in my freezer since last October I'm heading out!
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Re: Suggestions for OUCH
Reply #39 - Jul 9th, 2009 at 9:29pm
 
deltadarlin wrote on Jul 8th, 2009 at 8:11pm:
 

Access is a different story and it doesn't make a difference as to why access was nto gained(I'm NOT blaming anyone here, so don't even go there), people tend to feel like they are being left out of the process.  I would ask this, though, for those of you who could not access the board, did you try to contact someone through another venue (Gator and I talked via ch.com)?

.



Yes, no response. 

No barbs intended for any of the BOD presently serving.  It has been some time, and I just gave up.

Jerry
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Re: Suggestions for OUCH
Reply #40 - Jul 9th, 2009 at 9:47pm
 
Linda,

You have mentioned several times about not being able to get volunteers, but how are we to know what is needed?  We need a way to get the word about positions that need filling.

I'm not sure what amount of time I would have available, but I would not be averse to helping out on a limited basis.  The limitation is not due to lack of interest, but lack of time to do a job properly.

Jerry
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Re: Suggestions for OUCH
Reply #41 - Jul 9th, 2009 at 10:03pm
 

Luinda,

It is critical, crucial, imperative, mandatory (and even kinda important) to understand the intent of my comments.

Genuine open discussion/challenges/brainstorming is a mandatory part of any team effort. If there is no team, there is no effort.

I learned a long time ago to never get in the way of a group of motivated people with a common goal, because they will run right over you! Sure, it means deflecting a few tomatoes being thrown, but that's life!

However, like most people, my tolerance for liars, cheaters and genuine trouble maker’s is somewhere below zero. Knowing what I know today, I've seen a whole lot accusations and truth stretching going on in PM's and posts.

As you know, I'm one month into starting a new company with little time to spare. BUT, IF AND WHEN I see the folks that I trust and respect decide to help - I will jump in.

Yes, "someone" has to start the process, but there are soooo many bad feelings, so much mistrust and so many functional problems today, that as OUCH lives and breathes now - no way.

I’m a smart, efficient hard worker, not a masochist. 

When the Phoenix rises from the ashes you will see good folks jumping aboard, including me.

Respectfully,
Marc
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Re: Suggestions for OUCH
Reply #42 - Jul 9th, 2009 at 10:17pm
 
Thank you for your question Jerry.

How about starting with helping at the convention?  We will need help on Thursday putting the Goody Bags together; on Friday & Saturday we could use help on the Registration Desk and during the whole time we could use help shuffling O2 around to those that need it.  Not to mention preping for the Auction and during the auction.  Sign up for as much as you care to help. 

During the meetings we will be talking a lot about what has been said in recent days on ch.com and planning the future.  That will set what will be need during the next year.

After that, and if OUCH continues,  we will need potential BoD members as well as someone to take care of the web-site.  We will also need someone to be a back-up for handeling the web-site.

As a member of the BoD for almost 4 years now, my time invloved has been about 4to 6  hours a week.  More... when it is convention time.  My being chair of Family services is another thing but that is my choice.  Sometimes there is no one who needs me and other times I am busier than a one-legged goat in a ....well you know.


I am so glad you asked Jerry.  Any other questions I can answer for you I am here.   Smiley

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Re: Suggestions for OUCH
Reply #43 - Jul 9th, 2009 at 11:40pm
 
I'll see you there on Thurs, prob PM.  Put me to work.

Jerry
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Re: Suggestions for OUCH
Reply #44 - Jul 9th, 2009 at 11:50pm
 
Linda on the registration form (at least I think that's where it was) I completed the volunteer section too saying I'd help with registration, any computer work or whatever. Joe and I arrive Wednesday night. I have not been contacted either even though I threw it out there.

So I'm happy to help, just let me know where/what/when.
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Re: Suggestions for OUCH
Reply #45 - Jul 10th, 2009 at 1:00am
 
I am also more than happy to lend a hand, anytime, during the convention.

(Besides, I might get to grope more asses that way ...)

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Re: Suggestions for OUCH
Reply #46 - Jul 10th, 2009 at 4:48am
 
HERE WE GO AGAIN -- I AM THE "OFFICIAL" MASTER BUN TESTER and have been since 2000 (well actually 1999, but it was made official in 2000) and don't let Chuck tell anyone any different. Until I CHECK out the buns - they just ain't been graded! UNDERSTAND!!!  Smiley

Looks to me like people are stepping up to the plate ... count me in - I'll be there Wed. evening -- put the coffee pot on - I'll make sure Chuck puts in a full day's work. Wink He's not "real" bright, but I think I can teach him to put goody bags together. He'll be so proud once it's accomplished.

Hugs BD Kiss
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deltadarlin
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Re: Suggestions for OUCH
Reply #47 - Jul 10th, 2009 at 9:09am
 
Marc wrote on Jul 9th, 2009 at 10:03pm:
When the Phoenix rises from the ashes you will see good folks jumping aboard, including me.



You scaring the hell out of me Marc!  I've been using this statement ever since the original message was posted on that other thread.

OUCH will survive and it will come out stronger.

I'll be happy to help at convention, too.  I did last year (goody bags and registration) and it wasn't a big deal.

I just sent in my application to OUCH. I work full-time and and I'm trying to help my daughter with several problems, but I still have time to volunteer.  Shucks, all I have to do is give up some of my time spent cruising the internet (not porn sites like Chuck, though).

BTW, I will be talking to my friend today to get more information on setting up a live feed of the OUCH meetings.
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Re: Suggestions for OUCH
Reply #48 - Jul 10th, 2009 at 9:20am
 
Marc wrote on Jul 9th, 2009 at 7:10pm:
.......................................... but I just don't have any more room - especially when doing so would make me the target of heaps of criticism.I have a feeling that this problem is about to become a non-issue. We are seeing very solid positive input (along with a bit of natural venting)

I believe that it was Kevin that I saw first use the word "Unified" - that's exactly what this thread is helping to do.

Brew - go ahead and tell me that you wouldn't help out at least a little bit in a solid, enjoyable atmosphere with "unified" team work in play.

Yours truly would be happy to do so.

It's actually up to us - not "them" because we can become "them".

Respectfully,
Marc


This in bold is on point.  Everyone who has served OUCH, probably with the exception of the very first few, was part of the us.  I may not be a part of you all (as clusterheads), but I became one of "them", through a great deal of persuasion as I knew things would change.  

But then, that could be the best part.  Change is good.
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Re: Suggestions for OUCH
Reply #49 - Jul 11th, 2009 at 12:02pm
 
There's a different tone in this year's pre-conv discussion.  It is more respectful, less combative, and if this continues, know what's gonna happen? People ARE going to step up! Voices WILL  join together.
It has been said in the past, and now it comes up again.....the larger the chorus, the louder the song.
Before all of this happens(some is happening without your knowledge, by those who have been working for OUCH for YEARS), there is a very important decision to be made.

I've seen the issues of the past, and I know a lot of valuable talent has been lost due to egos, arguments and such, but you cannot dispute the headway some of the committees have made FOR SUFFERERS OF CH!

There's always a raucus pep rally prior to Conv......then, as all the members of OUCH and CH.com are fired up, the new board sits down to make the plans for the oncoming year. Everyone waits.....time seems to stand still and suddenly, someone calls the whole group on the carpet-claims they are doing nothing.......perhaps we need a press secretary- someone who will keep CH.com apprised of what is going on in the ranks.......and perhaps the Board needs to vow to deal with each other with complete respect. and maybe, there should not be 1 President..........maybe there should be 2 or 3, so noone can take off on an ego trip.........all of this can be decided, once the masses have determined whether or not OUCH is a valuable entity, worth keeping!

In the meanwhile, Conv is just days away. Many are looking forward to rekindling friendships, sharing stories, and looking to the future. The times, they are a-changing..do the greater number of CH sufferers WANT an entity like OUCH working for them, seeking a cure/control.advocacy? Or would they rather go it alone?

Cathi
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