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Topic: Points made by Brian_Y…He Was Not Wrong (Read 2002 times) |
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magman
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Points made by Brian_Y…He Was Not Wrong
« on: Apr 17th, 2004, 10:19am » |
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This may be unpopular, although I am hoping it will be accepted as constructive. If I can put the words and thoughts together with caring, intelligence, and sincerity, I trust acceptance, or at least an understanding is the outcome.
My first, personal order of business is an apology to Brian. He may have deleted his login, but because of what this place is, because of who we are [Clusterheads], what we suffer with, and all that we share…..I doubt that anyone really leaves for good. So to that end Brian, my apologies for the attack.
Some thoughts about O.U.C.H. rearrangement…no, not the staff, but rather procedural, website, and other related items to alter the possible public/membership perception of the organization. For Brian was correct in his summary that OUCH is our voice, not for one another like ch.com, but our voice to the world. A voice that must speak volumes to the doctors and researchers, insurance and pharmaceutical companies. A voice that must be united, strong and educated to ‘handle’ those inside the beltway [government].
A case in point, and one that Brian raised in general in his second paragraph concerning persons ‘associating’ themselves with an organization that is less than professional in appearance. OUCH just recently sent a letter to the NBA player Kendall Gill of the Chicago Bulls. Should Kendall decide to actually pay ‘us’ a visit and start scanning the posts….what will be his perception? Will a person of stature, of power or money, pay us any mind when they see such drivel? What about an outsider reading all of the attacks and the flames, of which I will be the first to admit as being a huge contributor to. And then there are the Officer/BoD open discussions…..from an outsiders perception, ‘we’ don’t have it together and couldn’t dream of taking the fight where it really needs to go [OUCH peeps…please don’t take this as a ‘jab’…none is meant personally or individually, and your hard work and dedication is truly appreciated].
So what do we do and how do we move the rudder a bit to the left or right to steer clear of the rocks?
Some humble opinions/suggestions……[talking points, details not defined here for brevity. If there is an interest, the details and ‘how to’ can/will be drafted and posted]
1) change the OUCH website to put our best face out there for public review
a. Information, Education, Lobbying, OUCH News, etc
2) Officer/BoD meeting procedure – total revamp…a new, more efficient way to communicate…the post-it method is not the answer.
3) Professional Appearance
a. Setup a tech help-line for assistance with software or hardware issues.
b. OUCH business posts only….nothing personal, no cute commentary. We have ch.com for that and I believe this was Brian’s reference to a clear and concise line between the two boards.
c. Never admit to ‘not knowing how’ where the public can view.
4) Doctors, researchers, Honorary Members – No access to the ‘internal’ OUCH web. Again….PERCEPTION.
5) Members can and do have the same perceptions as an outsider when it comes to ‘believing’ in OUCH. If we don’t see/hear/read our leaders conducting business in a business-like fashion, how can we have faith? Re-vamp the Member-Officer-BoD information exchange method. Not advocating ‘closed door’ sessions or policies, but searching for a solution more conducive to fostering unity while still allowing for questions and disagreement.
In closing, these are but a few of the items floating around in that empty space between my ears. I offer them here as food for thought. Digest them, think, and then comment if you so choose.
I wish you all peace and PFDAN’s. Now it is off on the cycle. It is the second of the first four beautiful days of spring and I am planning on at least 1000 miles worth of wind in my face, fresh air and some Heineken stops along the way.
-dan
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jonny
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Re: Points made by Brian_Y?He Was Not Wrong
« Reply #1 on: Apr 17th, 2004, 10:40am » |
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"Will a person of stature".......HUH?
You mean "Way overly paid jackass" that would be sweeping floors if he couldnt bounce a ball.
Who gives a shit what he thinks!
......................jonny
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ckelly181
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #2 on: Apr 17th, 2004, 10:53am » |
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Dan,
Are there other online boards that people are aware of that could serve as an example? Might as well not reinvent the wheel if it's spinning somewhere already...
Chris
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bobkip
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #3 on: Apr 17th, 2004, 6:26pm » |
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Tho some of BY's points have some validity, when I started the thread I was not soliciting some pissy assed response from a supposedly perfect person that threatened to take all and everyone to court and sue them for everything they have if they dared disagree.
I was just being a bit nostalgic and Barb D's response was in line with what I was looking for. BTW, Nancy got flamed for posting her Saturday funnies on the chmb.
Kip
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magman
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #4 on: Apr 17th, 2004, 8:52pm » |
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Thanks for the replies, and for not taking my head off to this point. 
Quote:"Will a person of stature".......HUH?
You mean "Way overly paid jackass" that would be sweeping floors if he couldnt bounce a ball.
Who gives a shit what he thinks!
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......jonny,
It's partly my writing style bro....'person of stature' could apply to a doctor, researcher or pharm. CEO. I happened to use that phrase in connection with one individual.
As to your exact comment....i must plead the 5th in a public forum. My support is now part and parcel of administrative functions for a pro team. I need to watch myself for her sake. But I'll buy the beers in Nash and we can laugh about it then.
Why we should care what someone like this thinks...for OUCH and filling the coffers, it could be very important. It simply comes down to a matter of ailigning the organization with connections....not what, but who ya know.
Quote:Are there other online boards that people are aware of that could serve as an example? Might as well not reinvent the wheel if it's spinning somewhere already...
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Chris,
Sorry, again my style....re-vamp was a bad choice of words. Makes it sound like I am suggesting that we make very drastic changes, when what I really mean is:
....moving some data around
....instituting restrictive logins for Docs, Reps, Professionals
....possibly BoD meetings via voice over IP or webcam
....other similar items but nothing major.
If needed, I believe Gator said he ran a BB before finding us here. So for info and talent, we wouldn't reinvent the wheel.
I must add....not advocating the re-structure or demise of anything DJ or Bob P have done with regards to the OUCH site. Just enhancing the way our tools are used.
Quote:Tho some of BY's points have some validity, when I started the thread I was not soliciting some pissy assed response from a supposedly perfect person that threatened to take all and everyone to court and sue them for everything they have if they dared disagree.
I was just being a bit nostalgic and Barb D's response was in line with what I was looking for.
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Kip,
Couldn't agree more. It was wrong for your thread to be hijacked [i am guilty of doing just that on the OUCH BD and now know better].
If you recall, even though I was late with my post, I took Brian to task quite hard for his diatribe and delivery.
Quote:BTW, Nancy got flamed for posting her Saturday funnies on the chmb.
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I haven't heard. Is this something new that happened? Please expand or point me in the right direction.
Peace,
-dan
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cootie
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #5 on: Apr 17th, 2004, 10:59pm » |
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I should probly keep my big mouth SHUT but I have been 'touring' some other MB's.....stuff that pertains more to my crap. They are totally strict.......no one even answers your questions or acts like yer there for the most part (not that I say much on them at all)......no cussing......no links or you are bann'd for a week......no 'one on one' like here......you go there......you read.....ask a question or two and LEAVE !!! Kinda like internet prison. All straight up talk and nothin but ! Great for information but they have NO FAMILY feeling. Not a place to go when down and out and need a laugh or two or someone to talk to. You'd die lonely. On one MB I visited breifly a lady got flamed ta hell and back for posting a joke that 'mentiond' a nun and a priest. I got the hell outa that place........'there's no place like home Pam'
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miapet
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #6 on: Apr 17th, 2004, 11:15pm » |
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I know that I'm not a part of the whole bigger picture . . but I would like to comment.
I came here to learn . . .and I read and read and read . . .and when I had questions, I asked them, and they were answered.
I would truly hope that this site doesn't become stuffy and impersonal. Sometimes, when a person (yes, me *g*) is at their wit's end . . .it's nice to be able to laugh and cry and giggle and gasp . . .and still be learning about the beast who has become such a big part of not just my life . . .
I hope this didn't offend anyone . . .and that I wasn't out of line. . .I just think y'all do a world of good . . .and I don't want to see it become a cold and unwelcoming place . . . .
miapet
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Kevin_M
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Re: Points made by Brian_Y…He Was Not Wr
« Reply #7 on: Apr 17th, 2004, 11:19pm » |
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on Apr 17th, 2004, 10:59pm, cootie wrote:but they have NO FAMILY feeling.
You'd die lonely.
there's no place like home Pam' |
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Just click your ruby (or bunny) slippers together anytime and open your eyes and those lions and tigers and bears (oooh, flying monkeys) go away. You may wake
up with a nasty headache, but surrounded by a family who cares.
Just keep following the yellow sick road and ride a horse of a different color pammy.  
Kevin M
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| « Last Edit: Apr 18th, 2004, 12:29am by Kevin_M » |
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Cerberus
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #8 on: Apr 17th, 2004, 11:29pm » |
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Am I correct in percieving that what magman is saying is put up a separate OUCH board strictly for the use of those we are trying to persuade support from?
This is a great idea actually, I understand the logic. BY and magman are both correct if this is the idea being conveyed. There really is not reason why doctors, pharm. reps. and otherwise important officials should be able to see absolutely everything that goes on either on the ouch site or CH.com. People in a position of some form of corporate power want information and answers to the large degree all the stuff that happens here and on the OUCH board is of no consequence to them....all they want/need to know is if we have our act together and how they can benefit by supporting us. Makes sense.
If it helps any leave everything the way it is but put up a front for the public to represent us in the busines world that is organized, responsible, and proper. (not saying that none of this is) OUCH is trying to grow but on many levels remains largely on a grass-roots level...I think that what these two are trying to say is if we want to play we gotta perform.
just an opinion,
Ramon
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| « Last Edit: Apr 17th, 2004, 11:31pm by Cerberus » |
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magman
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #9 on: Apr 17th, 2004, 11:31pm » |
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Please dont' mis-understand.......I am only talking about the OUCH BD. NOT CH.com.
I wouldn't dream of trying to change 'this' board or this family, or it's spirit. We all need this place DJ created....just as it is.
Sorry if I was not clear on that.
-dan
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magman
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #10 on: Apr 17th, 2004, 11:46pm » |
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Thank you Ramon. A pretty good analysis of one area of change.
To be a player, we have to portray ourselves as already winning players to attract the attention, and thus the assistance of proment people, power-people. Be they atheletes, entertainment, government, medical, or any other profession....our goal is to fill the coffers to continue OUCH work. To be heard and taken seriously.
-dan
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Mark C
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #11 on: Apr 17th, 2004, 11:51pm » |
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How would you all feel about OUCH members only having access to the OUCH message board only...like OUCH UK has done......hmmmmmmmm? The rest of the site, library etc would still be public, just the MB for members only.....what say you!
Mark
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cootie
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #12 on: Apr 18th, 2004, 12:14am » |
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I've always rode a horse of a different color so to say.....normal bores me. Never the same two days in a row Pam 
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Mastifflvr28
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #13 on: Apr 18th, 2004, 12:22am » |
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I know we ain't even CLOSE to being perfect yet...and do appreciate suggestions.
The part I don't "get" is...the members want all the ouch business public to them. They want no "secrets" or the implication that there ARE secrets.
So then we are posting in the public part of the board...but that looks unprofessional (cause we don't know EVERYTHING that we want to do, or how to go about doing things...course if we did, there would be no need for discussion.)
So...it's a catch 22 that I don't know the answer to.
Oh...and Dan...there is NO way my connection will let me do a web cam or voice stuff...and I can't get dsl OR cable...even though I bugged BOTH companies for 10 years now 
Also, the bod/officers are trying to organize a day to do regular meetings...almost impossible.
tanx
Mast
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jonny
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Re: Points made by Brian_Y?He Was Not Wrong
« Reply #14 on: Apr 18th, 2004, 2:57am » |
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on Apr 17th, 2004, 8:52pm, Magman wrote:| But I'll buy the beers in Nash and we can laugh about it then |
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You have a deal, Sir
................................jonny
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BobG
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #15 on: Apr 18th, 2004, 4:25am » |
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Let’s see…….OUCH is a VERY young organization. It is operated on a shoestring budget. All BOD members and every other person doing any work for OUCH is a volunteer. It was started in a garage about 5 years ago. Since that time OUCH has spread around the world. How many other organizations can say they accomplished so much in such a short period of time? Is OUCH perfect? No. But, at this time it’s close enough for me. Give it time, it’s still grow and learning.
The Red Cross, Cancer Society, AFL-CIO, Salvation Army, anti-smoking fanatics, Democrats/Republican/Independents, the United Way, Epilepsy support groups, Scholarship fund groups, save-the-spotted owl environmentalists………..the list can go on forever. How long have they been in existence? Decades? Tens of decades? Were they perfect and world wide in their first 5 years? Hell no! And after many decades they are still not perfect.
Most importantly, are they being run by volunteers or highly paid professionals?
I think OUCH and the Volunteers that are making it work are doing a great job. And I thank them.
If the OUCH website is to be 110% politically correct because an “outsider” might stumble across it, if it is to be only to brown-nose doctors or CEOs then how about someone kicking in $500,000 to start a fund to hire a professional management team, hire a company with (politically correct) experts to run the website, pay a public relations company to advertise and get a professional lobbyist to prowl the halls of government.
On second thought, make that a $million, for the first year’s expenses.
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Superpain
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #16 on: Apr 18th, 2004, 5:44am » |
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Yeah! WTF!?! There's got to be at leat one multi millionaire or billionaire out there with clusters! 
Where are you! 
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magman
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #17 on: Apr 18th, 2004, 7:37am » |
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General response.....this thread was started as a catalyst to thinking of ways to improve. It is not meant to belittle or make light of the vast amount of time and energy put forth by all of the OUCH volunteers. If I did that, I would be shooting myself in the foot, for I too, have many hours invested. Would I spend my time if I didn’t believe in OUCH?
Quote:How would you all feel about OUCH members only having access to the OUCH message board only...like OUCH UK has done......hmmmmmmmm? The rest of the site, library etc would still be public, just the MB for members only.....what say you!
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Mark,
Thanks for the input. This is a possible solution to the 'perception' of OUCH.
Quote:| normal bores me. Never the same two days in a row |
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Pam,
I have the same feeelings. Variety is the spice of life.
Quote:The part I don't "get" is...the members want all the ouch business public to them. They want no "secrets" or the implication that there ARE secrets.
So then we are posting in the public part of the board...but that looks unprofessional (cause we don't know EVERYTHING that we want to do, or how to go about doing things...course if we did, there would be no need for discussion.)
So...it's a catch 22 that I don't know the answer to.
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Mast,
Just brushing a very broad stroke here, and forgive me if this has been tried and proven unsuccessful…..maybe posting the minutes of the meetings, or a very condensed/edited version of the exchange of ideas would be enough for the members.
Without inserting some specific verbiage here from those open discussions, it is hard to ‘explain’ my reasoning. One thing I believe I can strongly suggest….and I do so because of personal-experience….if a member has an issue with OUCH policy, the Officers, BoD or Committee members, those issues should be addressed to the parties concerned via email. Posting such items to the MB only seems to blow an issue out of proportion. Writing style and/or the choice of words are misconstrued…not by the recipient as much as by others simply reading the post. We then have a snowball effect when one is not needed.
Quote:| there is NO way my connection will let me do a web cam or voice stuff...and I can't get dsl OR cable |
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I was afraid if this very real possiblity as i wrote the suggestion.....just means we keep searching for an alternative....Dan, the eternal optimist.
Quote:| Give it time, it’s still grow and learning. |
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Bob,
I am simply trying to help it grow a bit faster, but more importantly....much easier.
Quote:| The Red Cross, Cancer Society, AFL-CIO, Salvation Army, anti-smoking fanatics, Democrats/Republican/Independents, the United Way, Epilepsy support groups, Scholarship fund groups, save-the-spotted owl environmentalists………..the list can go on forever. How long have they been in existence? Decades? Tens of decades? Were they perfect and world wide in their first 5 years? Hell no! And after many decades they are still not perfect. |
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Agreed. In fact the AFL-CIO called me in to handle a problem they could not overcome after 18 months of trying.....bottom line...the staff and management would not play well with IT. Lack of communication, no time to talk, no time to train, don't want to spend the $$...all words of the day.
In the end, I turned down the contract because my advice was too simple for them....stop whining, get on the same team, tell each other what you need and get over yourselves. Corp USA, even a succesfull non-prof does not want to hear that. And btw, an outsider, visiting their web would have never seen an issue.
Quote:If the OUCH website is to be 110% politically correct because an “outsider” might stumble across it, if it is to be only to brown-nose doctors or CEOs then how about someone kicking in $500,000 to start a fund to hire a professional management team, hire a company with (politically correct) experts to run the website, pay a public relations company to advertise and get a professional lobbyist to prowl the halls of government.
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It is not that someone may 'stumble' across the site, we are making specific invitations. If we can look just a little less ‘grass roots’ we may snag the right person or firm who will hand over that 500K.
I already deal with a lobbyist [a clusterhead living within 5 miles of me, so we share few a beers and war stories daily]. Although this person has chosen to refrain from joining OUCH for a number of reasons…I have not been kept at bay with regards to useful information, and more importantly….introductions to who’s who.
In closing once again......
I have been, and always will be labeled a ‘rebel’. Knowing this, gaining vast agreement with many of my ideas could be a daunting task. I do it not to cause trouble, but to get the creative process flowing…to try and be better than we already are. To find a way to stop struggling and let other peoples money, influence and power help OUCH to be heard.
May you all have a wonderful and pain free day.
Peace,
-dan
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Mastifflvr28
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #18 on: Apr 18th, 2004, 9:41am » |
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I'm still tryin to think Dan, and it's not going well, but I'm really not a creative person. I can only think of arguments for ya, LOL.
The email dealy...also has been tried. And that one REALLY gets out of hand because it goes something like..."I got left off the list of those emailed"..."someone emailed some other info that I didn't get"..."oops, I emailed a personal opinion of the situation to the whole GROUP but meant to keep it secret". etc etc.
Make sense?
It's the whole "secrets" or implying that there are secrets out there, mentallity.
We were told to do all business in front of the members so that the members were able to give thier input to. I just can't see a way to make that look more professional, LOL. And we do do minutes to the meetings we do have.
So, anyways, I can't think of any other effective way of running that ouch board...and as soon as you make any of those catagories "private" we'll get yelled at. I'll spend some time today searching around on small non profit businesses and see if I can catch any "ideas".
Tanx
Mast
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #19 on: Apr 18th, 2004, 12:01pm » |
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Taking the discussions on OUCH private is one thing I have always agreed with. Yes, it was talked about, but so many people raised hell about it.....God knows what they thought was being talked about, but there was a lot a screaming about 'secrets' and 'things going on behind the memberships backs'.
My thinking is that we elect the officers and BOD to conduct business for the members. We should trust them to handle it in the way they see fit. If we don't like the results......we can change it during the next election. We don't need to be privy to every little item of discussion.
Just my two cents,
T
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #20 on: Apr 18th, 2004, 1:54pm » |
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I agree on alot said here, my whole point is:
Why can't we have things basically stay the same, leave the OUCH business up for membership to view so that every member can still voice an opinion and stay abreast of the issues at hand, but at the same time put up an organized front for the general public. Having worked for a corporation it was well known that internal operations were in effect a clusterfuck (pardon the terminology) but the public had NO idea what was going on behind the scenes. Essentially, the public saw one thing and those on the inside had their dealings in whatever way they saw fit.
Nothing has to really change, except for the public's view of OUCH...in short construct a site containing medical research info (basically some of the info from here in the left-hand buttons), A formal statement of our organization's mission, and contact info (for donations, links to organizations, clinics, whatever who we trust and are working with us to find a cure etc.) This could provide a professional front for the public to get their attention and curiosity. All the other "perks" and "benefits" (such as CH.com and the OUCH business board) could be accessed after membership. It basically is that way already (with the exception of CH.com). It would help limit the amount of weeding out of individuals who would seek to debunk us or just create chaos and don't really need the help and support we give each other.
The idea really wouldn't take much maintainance aside from updating info to keep it current and leaves the other stuff internal and limited to us and those who truly need/want help and support.
Thats all I was trying to say,
Ramon
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #21 on: Apr 18th, 2004, 2:07pm » |
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This may not be popular but actually, despite information to the contrary, this is very similar to what OUCH Uk now has as of today. We have a members board where all members can post, and we have a Support Board where visitors/possible sufferers/doctors/anyone can visit. They still have access to all the huge amount of medical info /advice/treatments etc and can ask questions which will be answered rapidly by the Trustees and Officers, all of whom are very knowledgeable. What non-members and visitors don't have access to are the sometimes weird, wonderful or completely inane ramblings of all the members either having a rant, a chat, a go at each other, or have logged on when pissed and haven't a clue what they are writing.
Wendy
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| « Last Edit: Apr 18th, 2004, 7:41pm by pubgirl » |
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Mastifflvr28
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #22 on: Apr 19th, 2004, 1:00am » |
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One of the considerations for "dues" was that the business board be the "paid" part of joining ouch. All of the other info would be free...just the business board would be available to people that paid.
The docs ain't gonna pay to see our business. The site has so much wonderful "public info". And that way we can keep all our "unprofessional" posts on the forums. I like that idea
Mast
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Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Charlie
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #23 on: Apr 19th, 2004, 5:47am » |
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Quote:| Never admit to ‘not knowing how’ where the public can view. |
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The first sign of intelligence is this admission. Ain't it? Temper it if you wish but not knowing is why these places exist.
My connection with OUCH itself has been minimal so I'll keep it to this. I may be missing something anyway.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Mark C
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Onward through the fog.
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Re: Points made by Brian_Y…He Was Not Wrong
« Reply #24 on: Apr 19th, 2004, 6:15am » |
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on Apr 19th, 2004, 5:47am, Charlie wrote: I may be missing something anyway.
Charlie |
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Not really...
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