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Topic: Please answer these questions! (Read 1448 times) |
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Elaine
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Hi All I have a few questions for you all.
1. Do you back O.U.C.H.? Just yes or no
2. If yes What would you like to see happening ? Is there something we can do to get you more involved?
3. If no what can we do to get you to join?
If you don't want to post your answers Please email them to me at dirtroadtoheaven@earthlink.net
I think O.U.C.H. is very important and I want to know the answers to these questions.
If you are new on the board and want information on OUCH please feel free to email me at dirtroadtoheaven@earthlink.net
Also click on the yellow tab OUCH website on the side of this screen and go read about it.
Thanks
Elaine
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Jackie
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Re: Please answer these questions!
« Reply #1 on: Mar 7th, 2004, 9:58am » |
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YES, we back OUCH 100%.
Blake & I are members of OUCH and have been for almost four (4) years. We joined soon after finding ch.com and learned that OUCH and ch.com are tied together but are not the same.
We believe strongly in OUCH and the work they are doing. OUCH has come a long way in a relatively short time and I see it growing by leaps and bounds in the very near future because of the efforts of some dedicated people working very hard for all clusterheads. OUCH is on the right trrack!!!
As to what I would like to see happen.....I'd like to see more clusterheads, their families and supporters join the ranks. I would like to see more participation. Support is all important....members are important!!!!
Folks......if you aren't a member please join now. That in itself is a positive step forward.
Jacks 
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magman
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Re: Please answer these questions!
« Reply #2 on: Mar 7th, 2004, 10:00am » |
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on Mar 7th, 2004, 9:04am, Elaine wrote:Hi All I have a few questions for you all.
1. Do you back O.U.C.H.? Just yes or no
2. If yes What would you like to see happening ? Is there something we can do to get you more involved?
3. If no what can we do to get you to join?
If you don't want to post your answers Please email them to me at dirtroadtoheaven@earthlink.net
I think O.U.C.H. is very important and I want to know the answers to these questions.
If you are new on the board and want information on OUCH please feel free to email me at dirtroadtoheaven@earthlink.net
Also click on the yellow tab OUCH website on the side of this screen and go read about it.
Thanks
Elaine
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Elaine and O.U.C.H. Officers, BoD and Members, since these questions are posed in the open forum, I shall respond in same.
I mean no disrespect to any organization or any one group or individual. I am merely stating my opinion/interpretation of what I have read both here and the O.U.C.H site. I am sure there will be many reasons stated for some or all things being as they are…..but in all sincerity, things being as they are have us at a literal stand still.
1) Yes
2) More delegation – even though membership is low [152], there are only a few handling a multitude of work, assignements, etc.
a. stop requiring or asking that an idea be submitted to the BoD for consideration and discussion….start brainstorming and discussion from the mention of the idea…have we lost our ability to think; to dream; to communicate??? An idea does not have to be 1 persons plan submitted to the BoD…let it be born of an intelligent pool of thoughts by all.
b. Try this approach…hold a brainstorming week…no idea is a bad idea and {can’t do/won’t work}comments are not allowed. Believe it or not, some of the biggest and richest companies function in just this fashion. Then take these ideas and build on some.
c. Listen to the little guys [meaning not Officers & BoD] and the wealth of professionals we have in our family. As an example, I direct you to the discussion on the printing and mass mailing of an OUCH brochure. Listen to the professional on this one, his numbers are correct and 1% is poor ROI.
d. If all of the I’s and the T’s must be dotted and crossed, then put someone in charge of getting it done so we may move on.
e. There MAY be many IRS and State forms that allow ‘Applied For’ inserted in specific EIN or State ID fields (it holds true in [For Profit] company setup. Get the forms in and move on.
f. The items listed above and the ‘apparent to the masses’ lack of action is one major reason for low membership and interaction by clusterheads. I am a persistent sob, and if every clusterhead comes up against the inaction, overlooked ideas/info, or told to present to BoD, do you really think you are ever going to generate enthusiasm and raise membership?
g. The rich get richer by ‘seeing’ an opportunity when it presents itself and taking immediate action. There is not time to discuss, or banter opinions over days or weeks. Get organized and take action.
I think O.U.C.H., CH.COM, and the clusterhead family and all we represent are very important. For that reason, I most certainly want to see all of the answers, and believe the should be posted here, under this topic when compiled.
Respectfully,
-dan
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Elaine
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Re: Please answer these questions!
« Reply #3 on: Mar 7th, 2004, 10:13am » |
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Thanks Jackie and Dan this is just what I am looking for the postive and the negitive. Thes questions are so we can listen to you guys and find a way to deal with things and maybe make it work for all.
I am just going to be listening here, and taking notes.
I promise these things will be taken into considertion. Each and everyone so post on. You will not be beat up for your opinions. I must know these things to work good for you.
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jonny
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Re: Please answer these questions!
« Reply #4 on: Mar 7th, 2004, 12:00pm » |
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on Mar 7th, 2004, 10:47am, 357Mag wrote:| You don't have an opinion? To apathetic to take the time write? Think nothin will change?? Rather spend your time on jokes and useless posts?? |
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Its the weekend.....Someone please clue the prick in .....LOL 
You all know where I stand.
...............................jonny
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ckelly181
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Re: Please answer these questions!
« Reply #5 on: Mar 7th, 2004, 1:12pm » |
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on Mar 7th, 2004, 10:47am, 357Mag wrote:| Tell OUCH how you feel. Give em this chance to try and really listen. |
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My OPINION:
1. Since I've joined the board (OUCH - not this board) this last fall it's pretty much been a continuous bicker-fest. I'm not sold on the efficacy of the organization. I believe it's a worthwhile cause and have worked, at least, on the newsletter.
2. I joined the OUCH board, and although I am required to log-in (and have registered), I'm still counted as a guest. I didn't ask for help - I just lurk occasionally.
I'm not apathetic - just leery. I work on many boards - some effective and some not-so-much. In my opinion, this one teeters in the later direction.
Again - you asked for opinions. I am offering mine.
Chris
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| « Last Edit: Mar 7th, 2004, 7:54pm by ckelly181 » |
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jonny
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Re: Please answer these questions!
« Reply #6 on: Mar 7th, 2004, 1:26pm » |
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on Mar 7th, 2004, 1:12pm, ckelly181 wrote:
My OPINION:
1. Since I've joined the board this last fall it's pretty much been a continuous bicker-fest. I'm not sold on the efficacy of the organization. I believe it's a worthwhile cause and have worked, at least, on the newsletter.
2. I joined the OUCH board, and although I am required to log-in (and have registered), I'm still counted as a guest. I didn't ask for help - I just lurk occasionally.
I'm not apathetic - just leery. I work on many boards - some effective and some not-so-much. In my opinion, this one teeters in the later direction.
Again - you asked for opinions. I am offering mine.
Chris
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The one thing that you forget is that CH.COM is not OUCH.....DUH!!!!
Maybe a check at the OUCH boards will clear your head.....Unreal!!!!
..............................jonny
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Jackie
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Re: Please answer these questions!
« Reply #7 on: Mar 7th, 2004, 1:55pm » |
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We've developed a cluster screening tool.
We have speakers lined up for the convention.
There is a new study being done on chronics.
There is talk of a new study for different dosages for imitrex.
The zomig nasal spray trials are almost ready to go live.
We have the Grant templates set up and ready to go.
We met and had extensive discussions with Glaxo.
We have done a sampling for $$ and triptan usage for Glaxo.
We have set up the outlines for education sessions.
We have set up the affiliation with the NECH and OUCH.
We met and had brief discussions with the Pfizer reps.
I am building an ongoing cluster library.
I have contact information for ACHE and AHS and info to resolve the conflict of information regarding the drip movie.
There was discussion regarding being on Oprah.
There was discussion on uniformity of chapters and they were particularly pleased with the PANJ set up.
The NECH suggested we reinstate dues.
We discussed the quality of life survey.
There is a CME cd called Migraine Blues with a cluster song/video on it that we have copies of.
There was discussion on an epidemiology and prevalance study for cluster headaches.
The above information was posted by Cat on the OUCH business board.....looks like some impressive stuff to me....
Jacks
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Elaine
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Re: Please answer these questions!
« Reply #8 on: Mar 7th, 2004, 2:03pm » |
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The reason I asked these questions is I am sure the BOD and Officers want to know. I don't want anyone beat up for their opinions. I want honest opinions for all answers.
We want you all in OUCH and I want to know why your not and if you are there what you feel we need to improve on.
I thank you all for your opinions, bad or good.
Like I said if you don't want to post here PM me or email me.
You elected me now I want to work for you. I can't if you don't tell me what the problems are. Take the time to inform us.
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Jackie
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Re: Please answer these questions!
« Reply #9 on: Mar 7th, 2004, 2:26pm » |
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Exactly, Elaine.... 
OUCH needs input from both members and nonmembers.....positive or negative.
357Mag put it well......"Brainstorming"
Jacks
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catlind
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Re: Please answer these questions!
« Reply #10 on: Mar 7th, 2004, 3:00pm » |
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Agreed with Jackie and Elaine.
I know that OUCH has had some difficulty. There are steps in place and things under way to get things sorted out and organized so that the Organization can operate more efficiently and effectively, and allow for brainstorming. Once certain major tasks are handled, and that should be by the end of next week, then the domino effect should take place and things will fall into place fairly quickly and easily (Murphy and your laws bugger off....). The last thing we want to do is squash member excitement and enthusiasm.
We are working hard to improve on things, to allow for OUCH to grow, and we are experiencing some pretty strong growing pains right now. Have faith and patience, and know that there is work being done, a great deal of it, even though you can't see it right now, you will in the very near future.
The list that Jackie posted about is all that we can give you right now. Some of that - most of that stuff involves proprietary information (go here for an explanation of proprietary info:http://www.charitychannel.com/article_2633.shtml so that's why there are no details released.
I understand when folks are frustrated, it's not easy being on our side of the fence either, knowing what we know, and knowing we can't say anything yet.
Please provide us with the input asked, and we will work hard to improve the system. Remember, we all have this affliction, including each of the board of director members, our heads hurt too, and our goal is one in the same. You have charged us with the task of leading the organization to fulfilling those goals. Give us your input, and let us do the jobs you elected us to do.
Cat
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BarbaraD
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Re: Please answer these questions!
« Reply #11 on: Mar 7th, 2004, 5:12pm » |
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Thanks Elaine for asking these questions.
As Cat says, there's a lot in the works right now at OUCH. As soon as we clear up a few problem areas, OUCH is going to take off strong.
Dan, Brainstorming is good and should be used. I like the idea of a week of Brainstorming to get ideas and no negatives. That's where the best ideas come from. One person has an idea and another improves on it until you have a plan. Great idea....
OUCH is going to need volunteers to "work" not just sit around and wait to see what's going to happen. Right now there IS just a few doing the majority of the work because NO ONE WILL VOLUNTEER to help or they volunteer and then don't do anything. We NEED workers.
Hopefully by the end of the week we'll have some of the paperwork jumble straighted out and can get down to some serious work -- then we NEED everyone to join OUCH and go to work....
Hugs BD
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Jackie
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Re: Please answer these questions!
« Reply #12 on: Mar 7th, 2004, 6:38pm » |
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on Mar 7th, 2004, 5:12pm, BarbaraD wrote:
OUCH is going to need volunteers to "work" not just sit around and wait to see what's going to happen. Right now there IS just a few doing the majority of the work because NO ONE WILL VOLUNTEER to help or they volunteer and then don't do anything. We NEED workers.
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Barbara,
I'm sorry but I have to say this....Elaine was asking if we backed OUCH and what we would like to see happen. She wasn't asking for a lecture or scolding for the members or volunteers. I find comments like the above quote counterproductive.
Jackie
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ckelly181
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Re: Please answer these questions!
« Reply #13 on: Mar 7th, 2004, 7:27pm » |
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on Mar 7th, 2004, 1:26pm, jonny wrote:The one thing that you forget is that CH.COM is not OUCH.....DUH!!!!
Maybe a check at the OUCH boards will clear your head.....Unreal!!!!
..............................jonny
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Nice, Jonny, nice. We are asked for our opinion, then give our opinion, then are slammed for giving our opinion. Thanks. I'm not as stupid as you are making me out.
Here is how I get to OUCH. On the left side of the screen, I click on OUCH website. That directs me to http://www.clusterheadaches.org/
I have a cookie already because I have previously registered. The pop-up menu asks me for my name and password, which are already in place because I have previously registered. It takes me into the correct realm.
When I go under Member's Corner, I choose New Business Board. If I attempt to post, I get the following reply:
"To post you must be logged in. If you don't have an account yet, please register."
Now what?..........unreal!!!!!!
Thanks for your sarcastic reply. You don't know anything about me, yet you feel you have the right to make disparaging remarks about me.
THAT'S why I don't care to participate in OUCH activities (at .com OR .org - seen the same stuff there). If you aren't in the "inner circle" you apparently have no right to express an opinion or make any mistakes at all. And, God forbid you make a mistake - you might as well start a flame war; you'd get the same response.
Chris
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| « Last Edit: Mar 7th, 2004, 7:37pm by ckelly181 » |
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Elaine
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Re: Please answer these questions!
« Reply #14 on: Mar 7th, 2004, 8:01pm » |
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Chris,
I was trying to figure out what you ment by guest now I know. That is a pain in the butt the way that works.
When you become a member you get to go to the members conner and you get a password. You have to also make a profile on the message board like you do here, to post. Once you do that your in but every time you go to the members coner you have to sign in then sign in again on the boards. We all have to do it.
Maybe we can figure out how to change that cause it is a lot of hassle.
Thanks
Elaine
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Kevin_M
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Re: Please answer these questions!
« Reply #15 on: Mar 7th, 2004, 8:05pm » |
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on Mar 7th, 2004, 10:00am, 357Mag wrote:
Try this approach…hold a brainstorming week…no idea is a bad idea and {can’t do/won’t work}comments are not allowed. Believe it or not, some of the biggest and richest companies function in just this fashion. -dan |
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This is one small part of the design for Six Sigma management, which is readable. There are other good points which could be applicable too, which I am familiar with, but this post would be too long.
I chose to e-mail Elaine with my remarks, because I am not bright about knowing how to get involved, though I have joined and would like to further things. I am sure Elaine will lead me in the right direction without me posting my stupidity here.
Thank you Elaine for bringing it up. I hadn't taken the initiative to pm you earlier about. I'd be happy to have the chance to work with those involved. Thanks for reaching out Elaine because since returning I DO wish there is more I can do to help other CH's. If OUCH is the way to do that then...
Answer for #1. I am FOR it.
Answer for #2. See happening? Me be more involved.
To get me more involved? Let me know.
Thank you Elaine in advance.
Kevin M
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Not4Hire
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Re: Please answer these questions!
« Reply #16 on: Mar 7th, 2004, 8:13pm » |
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Elaine:
I'm sure you know MY answers to your questions...
357:
at least we know where you stand...you have made some excellent points--both HERE (CH.com) and THERE (OUCH)... and believe me we are listening...
jonny:
...you have once again cut to the chase: CH.com and OUCH are different.... the distinction is lost on SOME: apparently ckelley181 ....thanks for pointin' it out tho.....
Jacks:
your post put it "in a nut shell"... 
chris (ckelley181):
it's getting a lot more than irritating to hear about "bickering and in-fighting" when what you see is simply the Right to dis-agree and say so.... this is a public forum: conducted on the Internet...
---and in regard to the OUCH log-in procedure: when the NEW board was put up, I had to do the same dance... and still do if I hadn't *Bookmarked*/*Favorited* the Message Board as opposed to the MAIN OUCH site...
Quote: Thanks for your sarcastic reply. You don't know anything about me, yet you feel you have the right to make disparaging remarks about me.
THAT'S why I don't care to participate in OUCH activities (at .com OR .org - seen the same stuff there). If you aren't in the "inner circle" you apparently have no right to express an opinion or make any mistakes at all. And, God forbid you make a mistake - you might as well start a flame war; you'd get the same response.
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somebody here smarter than me said: "Get over yerself...."
you'll never get jonny off yer case if ya don't....
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ckelly181
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Re: Please answer these questions!
« Reply #17 on: Mar 7th, 2004, 8:45pm » |
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>>jonny:
...you have once again cut to the chase: CH.com and OUCH are different.... the distinction is lost on SOME: apparently ckelley181
Nope - not lost - if you read my post, you'll notice I specifically stated what board I'm referring to. I even went through the log on procedure. Thank you, Elaine for clearing that up. It is confusing.
>>chris (ckelley181):
it's getting a lot more than irritating to hear about "bickering and in-fighting" when what you see is simply the Right to dis-agree and say so.... this is a public forum: conducted on the Internet...
I don't have a problem with disagreement - my job is full of that. Name calling and cutting remarks - that's different. A new person looking in is not going to want to run to the OUCH boards when that is what they see. AGAIN - OPINION...MINE...you can disagree, with me, fine. But I'm not calling you a name, and you don't have to call me a name.
If there are a lot of comments about the bickering - and not from just one source - what does that indicate about the organization?
As to getting over myself - nope - I have a right to my opinion. You said so, correct? I don't deserve to disparaged...even if the source is the most beloved person on this board. As I said, THAT'S why I don't trust the organization.
When someone asks for an opinion on this board, should we all merrily agree? Or, do we risk voicing an opinion? That is part of what makes an organization effective - the freedom to risk without ridicule.
It is disheartening that we are asked for an opinion, and then slammed for offering it. But that's all. I'm not going to go on anymore. It's not that big a deal to me. I stated how I feel; this doesn't change it.
Chris
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Elaine
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Re: Please answer these questions!
« Reply #18 on: Mar 7th, 2004, 9:21pm » |
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I am sorry this thread turned out as it has. I work for the members of O.U.C.H. I try to do my best to find out what the problem is but in reading this thread I can see the problems.
My email is still open and I promise you I won't beat you up for your opinions. I asked for them!
I truely want to see people there and people working together.
I am sure sorry if anyones feelings were hurt.
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cootie
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Re: Please answer these questions!
« Reply #19 on: Mar 7th, 2004, 10:13pm » |
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YES............I'll leave it at that............."good job" to you guys that work so hard for it all !! I'm Brad's eyes and ears on here cuz he doesn't have time to get on the MB......so I guess I am content to be a follow'r. Pam that occationally enjoys jokes and useless posts
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bobkip
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Re: Please answer these questions!
« Reply #20 on: Mar 7th, 2004, 10:33pm » |
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#1 Of course I do.
#2 Increased membership. That should be one of the first things dealt with if we get a brainstorming session going. Wish I had some ideas but right now my brain is mush.
Kip
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TxBasslady
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Re: Please answer these questions!
« Reply #21 on: Mar 7th, 2004, 11:56pm » |
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Yes, I am definitely a backer of OUCH.
Need to boost the membership. My thinking is that from the birth of Chapters.....we can contact sufferers and get them in the Chapters....thus boosting the overall membership #'s.
I also think we need to get some auctions rolling. I know the BoD has been very busy, but like I told you in Dallas, I will happily help you on the Fundraising Committee. Already checking out some things to auction.
I veered a bit on what you wanted for answers....sorry.
Love ya, Lady E !!
Jean
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Mastifflvr28
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Re: Please answer these questions!
« Reply #22 on: Mar 8th, 2004, 12:17am » |
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Tex...I'm just waiting on some promised auctions.
And Ckelly...I knew what you meant the FIRST time you posted...you know these 2 sites are seperate, thanks for your opinion.
My answers:
Yes
I would like to see members get on the business board and get involved and let us know what they want. We have LOTS of members...but only about 140 that are actually on the business board and only a handful or so that play with us there
Mast
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Re: Please answer these questions!
« Reply #23 on: Mar 8th, 2004, 2:37am » |
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Elaine,
1. Yes!
2. While I am a member I'm afraid I am rather inactive. Unfortunately at this time I hardly have time to visit this site, and most of the time I only give these posts a cursory perusal. I am very grateful for the work you folks are doing, and know there is a lot more behind the scenes that is being done than we know about. I would not be opposed to reinstating dues if necessary in order to help raise funds.
Hope this helps.
Jerry
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pubgirl
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Re: Please answer these questions!
« Reply #24 on: Mar 8th, 2004, 5:22am » |
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Elaine
It's a cliche I know, but it is a thankless job being an official in any organisation with members. You work your butt off, and then people kick it 
So
THANK YOU TO EVERYONE IN ALL THE OUCHES AND ALL THE OTHER ORGANISATIONS SUCH AS CLUSTERBUSTERS WHO WORK ALL OVER THE WORLD TO HELP CLUSTER SUFFERERS EVERYWHERE.
We'd all still be taking drugs that don't work and make our extremities turn black and fall off it it wasn't for all your efforts over the years.
Wendy
(oh and in answer to what you actually asked:
yes, I back OUCH AND ch.com and yes, I put what money I can where my mouth is as I can't help much in other ways over here, and I don't know what you should be doing apart from the number one for me is education of the professionals who are supposed to know how to treat us and don't e.g. the mailing leaflet that OUCh has been talking about)
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| « Last Edit: Mar 8th, 2004, 5:27am by pubgirl » |
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