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(Message started by: Donna_H on Dec 25th, 2004, 4:15pm)
Title: People of OUCH
Post by Donna_H on Dec 25th, 2004, 4:15pm
Please read the OUCH Members Business Board post by me.  Probably my last stand.  

Ever watch an ant farm?
Title: Re: People of OUCH
Post by BarbaraD on Dec 25th, 2004, 6:50pm
Read it and agree... Someone needs a wake up call.... And I'll bet we'll both get blasted for what we said... but if it walks like a duck and talks like a duck.....

Hugs BD
Title: Re: People of OUCH
Post by john_d on Dec 25th, 2004, 8:31pm
No disrespect intended to you ladies with this.

I read your thread but I also read the meeting minutes and others about what they are up to.  OUCH is just starting to get on its feet and considering the lack of interest when they really needed it, they are doing a great job at doing just that (getting on their feet).  

IMHO, right now they need the support of the clusterheadache community and the last thing they need is any kind of wake-up call or a shake up.

Thanks to the current folks at OUCH, good job.  



   
Title: Re: People of OUCH
Post by Donna_H on Dec 25th, 2004, 10:55pm
Dear john-d:

You are absolutely right about not needing a shake up and that is not the intention of my post.

My main beef if that we have no clue (other than the BoD meeting minutes, half of which is very old business not yet settled) as to what is going on with our organization.


Please re-read my post.  I am not complaining about the work that is being done today.....I am complaining about the fact that we do not seem to be accomplishing the goals that were discussed over a year ago...time sensitive work......missed opportunities to become involved in world scientific meetings now gone by....a list quite long and important.

I compliment those on todays board in their patience and perserverance, but their time is running out....that's one of the points.  We have a big board but do we know who is doing what? No.  Do we know what is being accomplished? No.  Want my guess?  It's about 4 people doing it all. Who's names do you usually see when you visit the OUCH members site?  Melissa, Mast, Chuck and the Pres.

This is MY organization and Yours.  Don't you want to know what's going on?  Well, you john, do, but I don't and I care too.  I'm not trying to undermine anything or anybody.  But I only see what you guys put in front of me and it looks like a bunch of old stuff.  We were talking attorney last March.

I've just thought of a few questions more, which I'll ask of the board.

OUCH is a good organization.  It is a necessary organization if we are ever going to be instrumental in a cure for clusterheadaches.  OUCH will never be anything at all if it's people do not become involved, ask questions and get to work.  

You new people.......do you want to know what OUCH is?  Just look at the margin to the left and click on it and do some reading.  Read our Mission statement and all of the other legal info.  Read about diagnosis, cures, helpfull remedies, peoples stories, the letters we receive everyday from people who have just found us and just now realize they are no longer alone with this nightmare.

We are an org. known world wide.  We need people who are interested in a cure for these misunderstood and misdiagnosed headaches to get to work and get serious about helping.

If you want to help....ask questions, vote, join in, participate.
Title: Re: People of OUCH
Post by john_d on Dec 25th, 2004, 11:14pm
Thanks for the clarification donna, I think I did misunderstand, it may have been the 'last stand' remark that threw me off.  Other than that, I really don't know anything more than what I read on the boards.  

In the past I have seen frenzies where folks with all kinds of different expectations of OUCH coming from 50 different directions at them, while at the same time I hear crickets when they post here asking for various forms of help.   It's always struck me as impractical and unproductive, and the attacks just result in people not wanting to get involved at all.

Thanks for your concerns and your help with the program.
Title: Re: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 12:37am
Haven't read it yet, and I have nothing against OUCH...in fact, support it all I can.  However, I did my best with the Jefferson studies and not too many people jumped at the chance.  Then Jefferson didn't want to get anymore names until they got the Zomig study up and running, which I'm told is still "pending."  Ah well....  Had my doctor just give me 2 samples of Zomig NS and say to hell with it...I can't be waiting around like this.

I had a lot of good ideas, but they didn't really seem to go anywhere, so now I am putting together a huge project on headache and migraine education for my honors project.  It was originallyu going to be on nurses who have chronic pain and the ethical implications of nurses on pain meds, but then when I spontaneously spent 2 hours putting together a brief overview power point presentation and my one teacher asked if she could incorporate it into our neuro curriculum and a few of the staff at the headache center started giving me lots of feedback on it, I decided that I would make that my pet project instead. :)

I want my ideas to continue to move forward.  I will always support OUCH and everything they do, but I will not stop and wait.  So although my project is not just on clusters, I think it is going to be a really big thing in the education of health care professionals on headache conditions by the time I am finished! :)

Excited about that....

So yeah...I will hop over there and read the boards at some point, but I just wanted to jump in and say that even if I'm not working with OUCH on the original projects that I had brought up, I've sort of just taken initiative to do my own thing...under my own name and credentials :)

This train keeps on rollin. :)

L2
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 12:48am

Quote:
credentials


Credentials?

Since when does any body need any kind of credentials to work for OUCH?
Title: Re: People of OUCH
Post by Donna_D. on Dec 26th, 2004, 12:50am
Since I authored the following post and posted it in the BOD private forum I see no problem with posting it here as well.


on 12/16/04 at 00:17:20, Donna_D wrote:
Idea for Convention Meeting.  Put together a manual of letters to the insurance companies to help people get additional meds, claims paid, etc.  A manual would help a lot more than hearing-sorry we don't have a cure yet...


I think the membership would be better served if we provided them with some ammunition against the insurance companies.    A book of appeal letters, listings of State Boards of Insurance, Insurance Terminology and Definitions, something TANGIBLE that will help them get through the day to day battles until we DO find a cure.

I can get help with this....have a couple of people I bet would help do it.  

Medical Professionals would still be needed to speak, so that is not what I am saying.  I think we need to HELP our members in some way...

Whaddya think?  Pro's ?  Con's?  Ideas?  VOLUNTEERS?


DD

Just making some notes here folks...I will forget it otherwise:


Include Letters to get more meds.
Letter to appeal denials of claims.
List of All 50 states Insurance Boards.
Basic Terminology and Definitions
Pre-existing Conditions:  defined
HIPAA
Letter to Employer
FMLA Information
Copy of Medic Card (ramon's)


Just because you can't see something doesn't mean it doesn't exist.


Sincerely


Chopped Liver
Title: Re: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 12:56am
Yeah I had done a CRAPload of work on the insurance stuff awhile back, but nobody wanted to deal with it.  It was too much work in their opinion and they didn't want to mess with it.

That's when I took my patient advocacy stuff and walked.  That's also why I find it slightly amusing that now there is a rush for the same insurance fighting/patient advocacy stuff I was discussing several months back after going through battles that nearly cost me my own sanity.

But heck...I'm one person.  We do what we can.
Title: Re: People of OUCH
Post by Donna_D. on Dec 26th, 2004, 1:20am

on 12/26/04 at 00:56:25, Lizzie2 wrote:
Yeah I had done a CRAPload of work on the insurance stuff awhile back, but nobody wanted to deal with it.  It was too much work in their opinion and they didn't want to mess with it.

That's when I took my patient advocacy stuff and walked.  That's also why I find it slightly amusing that now there is a rush for the same insurance fighting/patient advocacy stuff I was discussing several months back after going through battles that nearly cost me my own sanity.

But heck...I'm one person.  We do what we can.



Lil Sis,

You are more than welcome to help me gather/format information.  I would be happy to have your help.

DD
Title: Re: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 1:27am
It's ok.  It was done.  A long time ago.  But I can't deal with it now.  I have my educational stuff that I'm working furiously to get together while in contact with many headache and other health care professionals to make it as accurate as possible.

Plus I'm checking into the hospital on Monday for what could be 2 weeks or so.  I'm running on beyond empty at the moment.  This ought to be an interesting stay!  Much needed...but hoping it will be much helpful...
Title: Re: People of OUCH
Post by Donna_D. on Dec 26th, 2004, 5:16am

on 12/26/04 at 00:56:25, Lizzie2 wrote:
Yeah I had done a CRAPload of work on the insurance stuff awhile back, but nobody wanted to deal with it.  It was too much work in their opinion and they didn't want to mess with it.

That's when I took my patient advocacy stuff and walked.  That's also why I find it slightly amusing that now there is a rush for the same insurance fighting/patient advocacy stuff I was discussing several months back after going through battles that nearly cost me my own sanity.

But heck...I'm one person.  We do what we can.



After reading your post I went back to check on why this project never got off the ground.  When I researched the archives I found that the only thing wrong with your proposal (which is STILL a fabulous idead) was in the timing.  During the time you proposed your project to O.U.C.H. the BoD was busy plugging up holes in the OUCH dam, Dave resigned due to health issues, we had just lost Barbara and Renee...I am sure everyone remembers all this so I won't rehash it.

No one ever said anything even remotely similar to your following statement


Quote:
Y nobody wanted to deal with it.  It was too much work in their opinion and they didn't want to mess with it.


Here is a link to the thread in question.

http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1091830348

...in fact you were encouraged to continue the project.  It is not that we did not want to work on this project, we just had our hands full holding the entire structure of OUCH together with a skeleton crew.

I am not trying to give you any hassles Lizzie, I am only making sure that the true facts of the situation are known.  Too many times people read statements like yours and the others in this thread and take them as the gospel, when in fact, it is not.  In fact it is the farthest from the truth.  

O.U.C.H.  is being led by an incredibly talented, competent, knowledgable, dedicated and caring group of people who give thier time out of love and dedication "for the cause".  Repeatedly we suffer the slings and arrows, the sarcasm and accusations from the nay-sayers, and, unfortunately, a poor level of participation from our own membership.  Yet we keep on going despite all of  the adversity and negativity.

The saying "We will cross that bridge when we come to it" comes to mind regarding your project....the only problem is...we had to rebuild the bridge first.


ALSO, for the record.  I and I alone am responsible for there not being a newsletter produced by OUCH.  My life, since the first editon issued under me as editor, took a seriously unfortunate turn for the worse.  For those of you who know me, you remember and again, I won't rehash it. nor will I use it as an excuse, but I will accept full responsibility.  Jonny and Barbara D both paid for ads which have NOT run yet but the information has been given to Ken who has taken over the responsibility for the newsletter as the Chair of the Media Committe.  For my failure, I apologize.  

Right now I have my hands full planning the 2005 O.U.C.H. convention.  When the proposal was presented to the BoD, there was intention for the T.O.U.C.H. chapter to host the convention as a group effort.  Now until just a few days ago I have been working on all of this "solo" and I am doing the very best that I can and hope to make it a convention to remember for the members of O.U.C.H.

There are various other projects underway right now but I will let the heads of those committees answer questions about their activities.  Answers given only on a voluntary basis, because, you see, O.U.C.H. ~IS~ being run like a business with minutes of BoD meetings being posted and quarterly reports will be issued to the membership.  

So when it is said that "Nothing is going on over at O.U.C.H." It is not accurate.  

Stepping off my soapbox now.


DD
Title: Re: People of OUCH
Post by Donna_H on Dec 26th, 2004, 8:30am
Perhaps this thread needs to be moved over to the OUCH site?  

Don, I don't think  Liz meant credentials per se,  I think she meant support, permission,  approval of the organization, or something that she could present under the name of OUCH.

Donna D...many projects are being worked on.  What has been completed, signed, sealed?  This is not a sting. It is meant to be a question from an interestered member.

See you all on the other site?
Title: Re: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 9:23am

on 12/26/04 at 08:30:50, Donna_H wrote:
Don, I don't think  Liz meant credentials per se,  I think she meant support, permission,  approval of the organization, or something that she could present under the name of OUCH.


No worries about understandings there...we're good :)
Title: Re: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 10:03am
Hey Big Sis,

No arguing or harm intended, but as there really is a time for everything.  Then wasn't the time for my ideas and NOW isn't the time for my help.  I've got too much else on my plate right now.

If I make it out of the hospital without any major traumas...we'll see what I can do then.

Working and living in the center of Philthydelphia (as Randy would say) has given me the ability to learn many "tricks" to deal with the health care system.  And unfortunately I still see the dispairities and holes :(

But right now...toooooo sick to even think of ways to fix anything.  Fevers, UTIs, asthmatic junk, bone disease disasters, clusters, chronic migraine...yeah I'm falling into the reality show pit of death.   ;;D  

I told Billy J that I will try to get my phone number at the hospital to somebody if I get on the computer.  I can be found at 215-955-6000 (general patient info number) but you have to know enough info about me (HIPAA!!!!) to get the number. :)  Details to follow I'm sure ;)

Love you,
Lil Sis
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 11:27am

Quote:
Donna D...many projects are being worked on.


Anyone read the "Whats New" page lately?
Title: Re: People of OUCH
Post by Donna_H on Dec 26th, 2004, 11:46am
Why, good God, sweet thaing, look at the dates on that page.

Remember when our board sent you to Italy?  What a wonderful shot in the arm that was......things were being done (and still may be, if they'd let us know), we were excited......the membership was excited.  You did good things for OUCH.  Who attended the meeting the next year?  We were supposed to, but?  I'm sure there could have been more that one delegate, so don't say the person who should have gone couldn't.

I hate to see you picking sides.  Why not let's just try to sort things out and get moving in the direction of an election?  Is that horse stepping on your foot?  My, you seem crotchity this morning.

Why is it that I've been trying for many months, like 3 or 4, actually, and I cannot access our bylaws on the OUCH site?  I've reported this several times.

Are we going to move this thread or not?
Title: Re: People of OUCH
Post by nani on Dec 26th, 2004, 11:55am

Quote:
I hate to see you picking sides


Not really having a clue about any of this, I would like to ask...are there sides? Gosh- I'd hate to think so.

Let me take this opportunity to give a HUGE THANK YOU to all of you who do this for us.
nani (whose plate is already overflowing, I'm afraid.  :-/ )
Title: sRe: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 11:59am

on 12/26/04 at 11:55:11, nani wrote:
Not really having a clue about any of this, I would like to ask...are there sides? Gosh- I'd hate to think so.


No...not really, at least not IMHO.  I do think, however that it could be sort of compared to congress.  We have your democrats and your republicans (yes...I know that politics is another of our favourite topics here, but at the same time...OUCH being a non-profit organisation turns it into a "political" issue in and of itself!) -->  Anyway...do those lines of republican and democrat in congress mean anything?  Are there people who switch hit?  Is it a room of a few hundred in the House of Representatives who have a few hundred of their own opinions?

That's sort of the image that comes to mind.

:)
Title: Re: People of OUCH
Post by nani on Dec 26th, 2004, 12:05pm

Quote:
Are there people who switch hit?  


You mean, besides Jonny and don?  ;;D

Thanks for the info Carrie... :)
Title: Re: People of OUCH
Post by Lizzie2 on Dec 26th, 2004, 12:09pm

on 12/26/04 at 12:05:24, nani wrote:
You mean, besides Jonny and don?  ;;D

Thanks for the info Carrie... :)

 hahaha  ;;D

Here's a quote that will get its own separate post but I'm not kidding when I say I JUST read this and was like...holy crap, I have to post this quote!

"Pain is the deepest thing we have in our nature, and union through pain and suffering has always seemed more real and holy than any other." ~Arthur Hallam
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 12:21pm

Quote:
I hate to see you picking sides.


When you post openly about an organization expect criticism from those that have no faith in that particular organization that in fact, IMHO, does not come close to fullfilling the "Mission Statement".

OUCH talks up a good game but does not walk the walk.

As I have said before.OUCH is like a garage band that when offered to play Woodstock decided not to come out of the garage.
Title: Re: People of OUCH
Post by kissmyglass on Dec 26th, 2004, 1:46pm
DON FOR PRES!!

things were exciting then.

no offense marc I have the utmost confidence in you....it's everyone else I worry about even though I have no idea who they are.

kev
Title: Re: People of OUCH
Post by Charlie on Dec 26th, 2004, 2:00pm
Perfect Don.

Charlie
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 7:32pm

Quote:
DON FOR PRES!!


Thanks bud but I have no desire to lay across railroad tracks.
Title: Re: People of OUCH
Post by BarbaraD on Dec 26th, 2004, 7:34pm

on 12/26/04 at 11:27:39, don wrote:
Anyone read the "Whats New" page lately?



Yep -- not much is it??? Good call Don..

Hugs BD
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 7:37pm
The really pathetic part of that is that the web site is really the only tangible connection to OUCH a member or potential member has.

Not very impressive.
Title: Re: People of OUCH
Post by Renee on Dec 26th, 2004, 8:09pm

Quote:
OUCH will never be anything at all if it's people do not become involved, ask questions and get to work.



Quote:
It's always struck me as impractical and unproductive, and the attacks just result in people not wanting to get involved at all.



I think John hit the nail on the head.
Title: Re: People of OUCH
Post by kissmyglass on Dec 26th, 2004, 8:16pm
As usual, I shot off at the mouth a bit soon...there are a lot of good people working hard at thankless jobs..for what? For us, each & every one of us..  We need to support them.
To each one I apologize & Thank you!


Kev
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 8:22pm
I think John is to new to know the truth about OUCH.


Quote:
OUCH will never be anything at all if it's people do not become involved, ask questions and get to work.


Same old tired rhetoric.


Quote:
there are a lot of good people working hard at thankless jobs.


No argument there. Qusetion is how many of them are qualified to operate a 501(c)3.

When was the last time OUCH requested a resume for the positions held. My guess. Never.
Title: Re: People of OUCH
Post by Not4Hire on Dec 26th, 2004, 8:46pm
hey bro..as a Fellow Dead President, I'm a bit confused....(of course, as Dead Presidents we have the RIGHT TO BE CONFUSED...heh) ...
but still: I have (and had)  NO aspiration to be a BobP .... or any kind of Responsible Person, but I tried to do SOMEthing and I will continue to do someTHING... if it don't fit into somebody's pre-conceived notion of "Loving Service"....PLEASE!.... then fuckem...

I also have no problem with any-fucking-body that has posted to this thread.... especially DonnaH-- who needs no apologists--she is committed without any doubt. Or MarkC who has been a friend and support to all of us....

But don my brother, you say:

"When you post openly about an organization expect criticism from those that have no faith in that particular organization that in fact, IMHO, does not come close to fullfilling the "Mission Statement".

OUCH talks up a good game but does not walk the walk.

As I have said before.OUCH is like a garage band that when offered to play Woodstock decided not to come out of the garage."

And you also say:

      Re: People of OUCH
« Reply #26 on: Today at 6:37pm »      Quote Quote Modify Modify
"The really pathetic part of that is that the web site is really the only tangible connection to OUCH a member or potential member has.

Not very impressive."

.......now that I look at it, I absolutely understand your point:

Volunteers will always be considered fools by those who don't have the courage to step up and do something without expectation of reward.....

You did... and some really significant others... y'all know who you are.... I'm grateful.

...so where's my oar? I seem to have misplaced it....
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 9:20pm
I to have no desire to throw rotten tomatoes. It does nothing but consume peoples time and energy.

But as a cluster headache sufferer I will  point out what I see as systemic deficiences in an organization that claims to represent cluster headache suffers but does not step up to the plate.
Title: Re: People of OUCH
Post by john_d on Dec 26th, 2004, 9:54pm

on 12/26/04 at 20:22:12, don wrote:
I think John is to new to know the truth about OUCH.


probably true.

I also don't know the financials, and the mission statement is so general and subjective it is impossible for me to use it as any kind of measuring stick.  

I am hopeful though, could someone please tell me exactly what the expectation of OUCH is, what is it we expect OUCH to be doing that it isn't?   I really have no preconceived notions about this so....?
Title: Re: People of OUCH
Post by don on Dec 26th, 2004, 10:17pm
Thank you John. You just unwittingly made my point for me.

Another member (if you are a member) in darkness.

Very simple mission:


Quote:
The Organization for Understanding Cluster Headaches (O.U.C.H.) provides information and emotional support to cluster headache sufferers throughout the world.

We encourage, support and participate in research to develop new and improved therapies and practices for treating cluster headaches.


OUCH Imformation:

Last newsletter... 2003
Last "whats new" entry...2002
Last information brochure...best guess was 2003
There used to be a store that would sell awareness items to members and the public......its gone.


Support improved therapies and research:

Last membership survey  April  2002
"On going research", not a mention of the Harvard study, Zomig trials at NECH, or Clusterbusters.
NECH was supposed to be the medical sponsor of OUCH. What happened to that? No mention.

Want to know what OUCH "proposed" to do at the time of it's inception and for it's request for exemption? Click the link.

http://www.clusterheadaches.org/legal_docs/1023.htm


Quote:
So when it is said that "Nothing is going on over at O.U.C.H." It is not accurate.


Theres always something going on at OUCH. Its what all that something results in that is  questionable.
Title: Re: People of OUCH
Post by Charlie on Dec 27th, 2004, 3:19am
It sounds so good until you get there.

I'm part of the problem too in that I don't support it. When we post there though, not much other than a list of reasons why your post makes no sense results.

Sorry.

Charlie
Title: Re: People of OUCH
Post by TxBasslady on Dec 27th, 2004, 3:30am

on 12/26/04 at 22:17:40, don wrote:
Last membership survey  April  2002


Theres always something going on at OUCH. Its what all that something results in that is  questionable.



It's always been questionable.   Even when you were Pres.   It's no different today.  

You mention the last membership survey....you were Pres. then.  Why wasn't one done?   You were Pres till Steve (not4) took the position in 2004.  If this is a yearly thing, then it should have been done in 2003 as well.

Guess I don't understand the criticism.   It's very unproductive.

This is honestly not meant to be an attack on you, but some of the things mentioned from long ago, should have already been done.   Now, all of a sudden, it's made to sound as though these are fresh, new details that the current board and directors have not tended to.

If you are in need for items from the "store"....contact Bob (aka Blue Meanie).  He's a great guy, and will do anything to help anyone out.

Jean
Title: Re: People of OUCH
Post by Donna_D. on Dec 27th, 2004, 4:27am
My question is this..Obviously we are extremely aware of the problems with O.U.C.H., and we are working hard to resolve those problems. (See below) Why tell us something we   already know?  What purpose does it serve?  What preciptated your posts?

Note the date this was posted over on the O.U.C.H.  Member General Business Boards

on 12/03/04 at 10:04:10, Mark C wrote:
Media & Ken along with up to a dozen other folks have verbally committee to assist in the revamp of the newsletter and the website and the image of OUCH down to the letterhead.
I agree, we are short staffed. We have had many fluctuations in personal and we are having to deal with what appears to be a certain level of apathy among members about serving OUCH. We are still here pluging along and moving forward in spite of this.
We are doing the best we can.....things are happing......and I agree we need to do a better job of disseminating information.
If we can staff all positions these workloads can be more even divided among a full staff and delays in all areas should be decreased.
We are also well aware of these and more issues and are not backing away......we need more help.
We are also open to suggestions and of course any volunteers to assist in these endeavors and such has been posted here and on CH.com.....we could use some help.
Service positions needs have been posted for some time, if not filled, the balance of the work will be done by the people willing to work....like any other business. We will elect and appoint the best people we can find.
I am more optimistic now than ever before about the future of OUCH. Legal counsel has been retained and issues of concern that should have been taken care of long ago are now being addressed on a professional level to insure that OUCH complies with all laws and also to reduce our liability.
More work has been done in the last few months because we have been  able to concentrate on actual work instead of just defending ourselves.
In Loving Service,
Mark


Quote:
Donna D...many projects are being worked on.  What has been completed, signed, sealed?  This is not a sting. It is meant to be a question from an interestered member.

Only one example of how the Officers and BoD are working on fulfilling the Missions and Goals of OUCH.  

on 11/19/04 at 12:56:11, Mark C wrote:
O.U.C.H (http://www.clusterheadaches.org/), Organization for Understanding Cluster Headaches is pleased to announce it’s full support in the promotion of the pending Psilocybin Clinical Trials set to be conducted at the McLean Hospital (http://www.mclean.harvard.edu/), Harvard Medical School (http://hms.harvard.edu/hms/home.asp).
O.U.C.H. will help to promote the study to its members and provide open discussion of this study on their website. We further wish to assist by donating one thousand dollars [$1,000.00] to MAPS specifically for this study.

AND
Lastest Meeting Minutes

Quote:
1. Convention date - The convention committee is currently shooting for a date of July 15, 16 & 17 to hold the OUCH annual convention.  This date is not yet set in stone.
2.  Archiving board activites- A Motion was made and seconded to archive past board discussions.  Motion passed by a vote of 6 ayes and 2 absentees.
3.  OUCH Attorney matters- Currently in discussion and waiting for correspondence from the Attorney.
4.  Obtaining a CPA on retainer for OUCH- Discussion ensued about hiring a CPA to take care of treasurer duties, with certain financial responsibilities remaining for OUCH Officers.  The current President will be obtaining quotes on the cost of doing so.  Topic shelved for next meeting until information can be provided.
5.  Possible procurement of the domain name OUCH.org- Discussion ensued and a decision was made on the possible attainment of the domain name www.ouch.org to be used as a public, professional front page door to OUCH.  The current website of www.clusterheadaches.org will remain as well as the message board.  Ken Olson is currently heading up this task.
6.  New OUCH BoD member- Voted into the Board of Directors is Bill Mingus.  OUCH welcomes him to the team!
7.  OUCH dues-  A decision was made to recant OUCH membership dues and instead use the procured OUCH grant software to obtain funding.
8.  Justin Ott's CH Documentary-  A Motion was made and seconded to donate a sum of $500.00 to Justin Ott for his cluster headache documentary.
9.  Recording Secretary Position- Currently a motion is on the table to elect Peggy Flick (Redd) as the next Recording Secretary, who's position would begin on Jan. 1, 2005.


AND
[continued]
Title: Re: People of OUCH
Post by Donna_D. on Dec 27th, 2004, 4:41am
(continued from previous post)

on 10/27/04 at 17:47:26, kolsen wrote:
Find more help

All of the following logically fit with what I do...   with a combination of Dan and others that have agreed to help this all can work

I will be looking for help in the following areas
- designers
- Developers
- Writers!!!! technical and creative


Corporate image
    Brochure - template
   Colors
   Letter head - template
   business cards - template
   envelopes?
   Presentation folders
   Press release - template

Web Site
  Procuring www.ouch.org
  Design of site for public face - look to follow corp image

membership packet
   Member brochure - doubles as a public brochure?
   Membership Card
   Welcome Letter from Pres
   ByLaws
   Headache Diary Sheet?
   C0-workers Letter
   bumpersticker
   Pen
   Presentation Folder.
   Newsletter - What is the latest

This is all that I could think of....  I think that it is enough.

media Kit
   Presentation folder
   Public Brochure
   Mission Statement
   letter from Pres
   Who's Who contact list
   Annual Report
   Press releases of most current PR

Mail for Doctors offices -  
   Poster for Vascular Headaches? Something that will be sticky and used that would stay on the wall of a room.


Grants
  resources obtained
  Long list
  Short List
  Grant writers found and started


PSA's
   Radio 30 & 60 sec spot series
   TV 30 & 60 sec spot series

I think all of the afore mentioned projects qualify as working toward fulfilliing the goals of O.U.C.H.

O.U.C.H. has had problems for a long time.  I have seen people take the time out to offer criticism, but how many have offered to put thier previous experience to work for O.U.C.H., again.  Only one so far....

Quote:
..so where's my oar? I seem to have misplaced it....


We can only row so fast...a little help would be appreciated.  We are now in a position where we can and have  put volunteers to work for O.U.C.H....want to see these things change?

on 12/26/04 at 21:20:55, don wrote:
But as a cluster headache sufferer I will  point out what I see as systemic deficiences in an organization that claims to represent cluster headache suffers but does not step up to the plate.


Don, how about writing some text for the website covering the "What's New" area.  
on 12/26/04 at 19:37:22, don wrote:
The really pathetic part of that is that the web site is really the only tangible connection to OUCH a member or potential member has.

Not very impressive.



Donna,  how about volunteering to re-join the committee that is working on the Bylaws

on 12/25/04 at 15:57:01, Donna_H wrote:
When I was Bylaws Committee Chairperson, it was hard just to get the small committee of three or four people together for meetings.  



Barbara, I have forwarded your list of concerns regarding IRS compliance issues to Mark C. and we are going to address them with whichever CPA that O.U.C.H. hires. ( It is difficult to find someone to follow in your footsteps.  You know O.U.C.H inside and out.)  We are seeking one that specifically has experience with Non-Profit organizations.   If you can identify any other violations or oversights, please let me know.  If we are not in compliance, shouldn't a dedicated member (such as yourself) assist in any possible way to rectify this situation?


on 12/25/04 at 18:42:06, BarbaraD wrote:
Just a few things that I can put my finger on - OUCH is out of compliance with the IRS BIG TIME and could have its status pulled without warning, but don't listen to me - what the hell do I know!

The experience of former officers and BoD members can be invaluable to our organization.

Any and all volunteers are welcome.  And don't anyone give me the "I volunteered once and nobody paid attention" story...I have heard it, and although I can completely understand it....we had to get back on our feet. Now we are ready and need your help.  If you volunteered once, what is stopping you from doing so again?



DD  

   
I shall pass through this world but once.
     Any good thing therefore that I can do, or any      kindness that I can show to any human being, let me do it now.
     Let me not defer it or neglect it, for I shall not pass this      way again.


Etienne de Grellet
Title: Re: People of OUCH
Post by BarbaraD on Dec 27th, 2004, 7:32am
Donna I know you well enough to know that you’re sincere, but the fact is – things are not getting done. They’re being discussed to death and no action.

The newsletter doesn’t have to be “perfect” – we just need someone to get it out. One a year just doesn’t get it. Even if it’s only four pages – we need something.

The financial reports that have been given are “inaccurate” and don’t tell us anything. Looks like they’ve been “edited” from the time they were first posted.

You say the input from the members who’ve been around since the beginning is needed, yet when one points out something, they are told to “butt out!”

The GEL letter was ready to be sent to the IRS in July, yet it still hasn’t been done. Bob P and I put a lot of work into that, yet the BOD wants to hold up on it for some reason.

I sent Mark a list of noncompliance issues back months ago. Without communication who knows what’s been done on those?

The BOD needs to start communicating with the “members” – all this secret stuff and we’re doing great things just doesn’t hold water any more. We want to know WHAT these great things are. Yet if we ask questions – we’re given some half baked answer or a smart remark.

When the OUCH website goes weeks without a post – something is wrong. Maybe the BOD should consider coming out of the closet and letting the members give some input like OUCH was set up to do originally. Then you might see some interest in it.

What’s the big problem with getting an attorney or CPA to answer questions? When we were forming OUCH, I picked up the phone and called several CPAs and a couple of attorneys and got some answers when I had a question. But this has been considered a “conflict of interest” by the BOD because I “knew” these professionals. We got it done for free and got the right answers, yet this board can’t even call anyone.

Thank goodness we still have ch.com for support because right now OUCH isn’t giving us much.

But that’s just my opinion.   BD
Title: Re: People of OUCH
Post by Donna_D. on Dec 27th, 2004, 8:21am

on 12/27/04 at 07:32:14, BarbaraD wrote:
Donna I know you well enough to know that you’re sincere, but the fact is – things are not getting done. They’re being discussed to death and no action.  

I am very sincere.  If  you check my previous posts, things are getting done.  There are only a few of us doing all the work.  It will take longer without more "hands on deck".

The newsletter doesn’t have to be “perfect” – we just need someone to get it out. One a year just doesn’t get it. Even if it’s only four pages – we need something.

I accept full responsibility and blame for there not being a newsletter issued in 2004.  Ken is now handling this.

The financial reports that have been given are “inaccurate” and don’t tell us anything. Looks like they’ve been “edited” from the time they were first posted.  

Michelle "inherited" the books because no one else wanted them.  We are actively seeking to employ a CPA to audit the books and get them back in shape.

You say the input from the members who’ve been around since the beginning is needed, yet when one points out something, they are told to “butt out!”

I would like to know who on this current board told anyone to "butt out" or any similar statements.  Input from our members is necessary for growth and participation.

The GEL letter was ready to be sent to the IRS in July, yet it still hasn’t been done. Bob P and I put a lot of work into that, yet the BOD wants to hold up on it for some reason.


Quote:
author=Bob_P link=board=new_main_board;num=1095688489;start=0#7 date=11/14/04 at 11:41:31]OK, well let me post the request this way then.

I am going to prepare the paperwork for the Group Exemption Letter to include chapters under OUCH's 501, c, 3 non-profit status.  Any chapters included in the GEL would be official non-profit groups.  About the only added work for the chapters is that they will have to submit income tax forms to OUCH so they can be included in OUCH's tax return.

I will work on the paperwork, to be submitted to Mark for his signature and submission to the IRS, next weekend.

If any chapters would like to be included in the GEL please post to this thread by Friday, 11/19.

Thanks,
Bob


 The GEL letter was still being worked on as late as November and I do not have firsthand knowledge that Bob has forwarded it to Mark.  Mark will need to answer that question.


I sent Mark a list of noncompliance issues back months ago. Without communication who knows what’s been done on those?  

The non-compliance isues are being addressed by the attorney and, when hired,  the CPA.

The BOD needs to start communicating with the “members” – all this secret stuff and we’re doing great things just doesn’t hold water any more. We want to know WHAT these great things are. Yet if we ask questions – we’re given some half baked answer or a smart remark.

I am unaware of any "secret stuff"  Everything we are working on at this time has been addressed either in the members board or in the minutes of the BOD meetings.   I noticed this is twice now that you referenced "smart remarks"....If you would, please direct me to the thread(s) where this occured.  I feel that when posting on the O.U.C.H. that every officer and BoD member should act as a professional when dealing with O.U.C.H. issues..

When the OUCH website goes weeks without a post – something is wrong. Maybe the BOD should consider coming out of the closet and letting the members give some input like OUCH was set up to do originally. Then you might see some interest in it.  

I just checked the Members General Business Board and I cannot find where there were "weeks" without posts.   We ALL know that lack of participation from the members has plauged O.U.C.H. since it's inception.  It has and more than likely always will be an issue.

What’s the big problem with getting an attorney or CPA to answer questions? When we were forming OUCH, I picked up the phone and called several CPAs and a couple of attorneys and got some answers when I had a question. But this has been considered a “conflict of interest” by the BOD because I “knew” these professionals. We got it done for free and got the right answers, yet this board can’t even call anyone.

We have been asked to run O.U.C.H. like a business..  This means hiring a qualified person to do this critical job.  We intend to create and work in a business like "atmosphere" and to "Do it right the first time".

Thank goodness we still have ch.com for support because right now OUCH isn’t giving us much.
I hope that my answers will change your mind about this statement.

But that’s just my opinion.   BD
Title: Re: People of OUCH
Post by Lizzie2 on Dec 27th, 2004, 8:53am
And I think what has been amazingly consistent here is that the members blame the BOD for lack of action, secrecy, etc, and the BOD (or whatever in heck it is currently called) blames the membership for not helping out, not getting involved, and inflating things out of proportion.

Well, I'm still reeling from a few things that I am not putting down word for word right here, but I'll say for one....

These posts and arguments never change.....

Who really is to blame?  Who cares...
Title: Re: People of OUCH
Post by don on Dec 27th, 2004, 8:59am

Quote:
It's always been questionable.   Even when you were Pres.   It's no different today


My point made again. OUCH keeps chasing its tail. It's systemic.


Quote:
You mention the last membership survey....you were Pres. then.  Why wasn't one done?


It should have been. Just like a revamping of the web site. I requested we visit that issue but the big time consuming discussion was on wether or not to charge "membership dues"? For what!? That was the epitomy of irony.


Quote:
some of the things mentioned from long ago, should have already been done.


Chasing the tail.


Quote:
Now, all of a sudden, it's made to sound as though these are fresh, new details that the current board and directors have not tended to.


They haven't.


Quote:
If you are in need for items from the "store"....contact Bob (aka Blue Meanie).


Check the archives. Mug post.


Quote:
Guess I don't understand the criticism.   It's very unproductive.


You have to be kidding me. Whats not to understand? Not productive? You dont think exposing the deficiencie in an organization is productive? Then how do you know what to fix?

Lots of sincere people running OUCH. Problem is there are to many of them.

How mant BOD members do you have now? You only need three.
Title: Re: People of OUCH
Post by john_d on Dec 27th, 2004, 9:44am
I get these, I am in cycle right now and they wake me almost every night, If I miss the night I get hit in the day.  I am interested in helping an org that will increase the AWARENESS of this problem.  OUCH is never going to have the funding for actual research or anything else.  But if they increase the AWARENESS the research will be funded elsewhere, the researching doctors will take an interest in something that is in the public AWARENESS.  I saw that OUCH granted Justin Tott a small contribution for his documentary.  This is a positive push towards increasing AWARENESS.  I am willing to bet OUCH, even with all its 'problem', has substationally helped increase AWARENESS in it's existence so far.  Even if it did not specifically do anything but fund conferences, it's very existence increased AWARENESS.  That is why I am hopefull, that's why I am positive, that's why I believe in it.

   



Title: Re: People of OUCH
Post by don on Dec 27th, 2004, 9:51am

Quote:
If I am a member don?   That comment was purposeful attempt at exclusion


How the fuck would I know ?

What a fucken jerk!
Title: Re: People of OUCH
Post by john_d on Dec 27th, 2004, 9:54am


ok, you make me think I was definitely wrong about that.   
edit
Now that's clarity, I was wrong.  I removed for what that is worth.
Title: Re: People of OUCH
Post by don on Dec 27th, 2004, 10:11am

Quote:
I saw that OUCH granted Justin Tott a small contribution for his documentary.


That and the public support for the Clusterbusters project are the positive steps OUCH needs to continue.
Title: Re: People of OUCH
Post by Lizzie2 on Dec 27th, 2004, 10:12am

on 12/27/04 at 09:54:13, john_d wrote:
ok, you make me think I was definitely wrong about that.   
edit
Now that's clarity, I was wrong.  I removed for what that is worth.


Now John, dear...

Remember what we've all discussed about taking a breath before posting in anger!  You are not allowed to delete yourself!!!   ;;D

Hugz,
Lizzie :)
Title: Re: People of OUCH
Post by john_d on Dec 27th, 2004, 10:27am
It was more ignorance and stupidity than anger.

Rerailing after my derail into that ignorance, I'll say that I will just continue to do my small part to help with OUCH and I hope others will do the same.  And I hope the folks working for OUCH will feel some purposefulness of their mission as they go about that work.  It's important to me and I think to anyone who has these fricken things.  And I think everyone's  concerns here are a further reflection of that importance.  Thanks OUCH.  :)  
Title: Re: People of OUCH
Post by Donna_H on Dec 27th, 2004, 10:49am
OK, so it looks like OUCH is broken.

Seriously and in good attitude, what can be done about it?  We OUCH members cannot let this continue.  We MUST either fix it or bury it.  It is looking ridiculious

And again, I ask that we take this thread to the proper site.

DonnaD, I know how dedicated you are, but your answers above just don't do it.

First of all, the BoD is just postponing old business that has been postponed before.

Second, I offered to help out on the Media Committee, gave references and the address to my personal website.......but didn't get a reply until I changed my mind after waiting weeks for an answer and than said "forget it".

I don't want to go on and on with this.  There's no point. The answer is in the latest post on the OUCH site.

We need to make some major changes.

See you all over "there".  Please.
Title: Re: People of OUCH
Post by Mark C on Dec 27th, 2004, 11:12am
It is hard to do business and defend one's self against attack from the very populace which one represents....therefore in the best interest of OUCH I will not reply repeatedly to such happenings....that being said......99% of the current "problems" facing OUCH are a result of the current service structure inheriting said problems. I am not laying blame, as some would do, I am correcting these issues.

OUCH no longer does business on the street corner. The current administration was "hired", at NO pay or even much gratitude to do a job, promote awareness of Clusterheadaches and provide a " clearing house" of information which we are doing.

Are we having some issues? Of course, if was easy everyone would do it...

Are we doing a correct job? I think so.....and at times under great adversity, especially from former members of the service structure who either quit their positions or are not even a member of OUCH......*sigh*

You people have a damn fine group of professional people who are doing a thankless job for free.....lay off!
My people are working hard......if you don't believe me, or trust us....elections are in November....until then we are all you have.

We have goals.....the NEW OUCH site will be up this year...time, precious time, is not being spent updating the current site because it is going away.....just like the un-paid professionals on staff.
One goal is to have at least ONE PAID PROFESSIONAL to staff OUCH 8-5, M-F and work FULL time....for OUCH....for you!

Donna has done a fine job of highlighting just some of the current projects OUCH has on it's plate, YOUR plate.

Membership dues have been "backburnered" because we are in the process of applying for multiple grants and the OUCH team decided that was a MUCH better way of funding than dues could ever be.

We have secured the services of an Attorney and a CPA to insure that any compliance issues, new or old are being dealt with, responsibly and professionally.

Mention was made of our donation to Justin, money well spent in my opinion....and just the beginning...

2005 will be a banner year for OUCH....with the playground that the public board on the OUCH site had become the staff has had more time to do the work of OUCH....and anyone who want to help is personally invited by me, The President of OUCH, to tender your desire to me at cox3406@hotmail.com and I will put you to work.

Remember though.....it pays nada!

.....I am on vacation till the New Year.....Happy Holidays!   ;;D

In Loving Service,
Mark Cox
OUCH President
Title: Re: People of OUCH
Post by Lizzie2 on Dec 27th, 2004, 11:45am
Well I am neither a former officer nor a non-member of OUCH, but I am someone burned by the politiks and system going on.  I wasn't going to drag certain things up because I feel that there is no need to prolong anger or hurt over certain events and issues, but it's getting to the point where you are making those of us with legitimate complaints and concerns look like a bunch of not a very nice persons who sit around on our couch's posting to ch.com and do NOTHING for OUCH.

Well...that isn't correct.  Some of your BOD KNOW that isn't correct.  For some reason the two of you plus one more think that this IS the truth, and therefore feel the need to be on the attack.

When I ran for a BOD position several months back, there were two people who did not obtain a position.  I was one of them, and Bob (Alleyoop) was the other.  I won't get into anything that concerns Bob as there is no need to drag him into this mud pit.  But it was more or less politiks at work again.

I had laid out my ideas, my connections, my abilities.  I've had experience with several non-profit organizations as well as raised money for those organizations in quite large amounts for someone of my age with absolutely no business experience or income of my own.  But I know how the NP's work.  Not only that, but I have a connection to a lawyer who suffered CH who I'm sure would have been more than happy to help in certain areas, but that is highly unlikely now.

I'm a nursing student at a center that has one of the most world-renowned headache centers in the world.  I did research for them for 4 straight months, and I know everyone personally who works there.

Oooooooooooook.  But yet, these were good reasons to be one of two not elected.

I am not getting into the copy and paste bull-shit because I for one think many things are taken out of context when that little game is played.  I'm tired of this.

I'm tired of the rude way with which officers treat members...like they are "holier than thou."  I'm not speaking of all on the current BOD and they know that.  If they don't know that, then they can contact me personally and I will reassure them of that.

But yes...I am still pulling the knife from between my shoulder blades, and yeah I'm still pissed about it.  And I feel like I wasted a huge amount of time.  Convention proposals, ideas, running for BOD.

Yes I will think twice before laying my own ass on the line (in the professional or personal sense) ever again for a "worthy cause."

And that's all I have to say about that.

L2
Title: Re: People of OUCH
Post by john_d on Dec 27th, 2004, 11:55am
Dear God, when am I gonna learn?  what cosmic force is going to teach me the wisdom of Mr. Happy and others here, take it light and easy and quietly do my part without stepping in the doodie pit.   your humble bumbler, jd

Title: Re: People of OUCH
Post by Bob P on Dec 27th, 2004, 12:21pm
Group Exemption Letter is my project.  I volunteered to do it and it is the only OUCH project I currently have in the works.  The current BoD is not holding me up on this project.  I forwarded some forms to another Chapter a while back and am waiting for their return so I can include them in the letter I will send to Mark for signature/approval.

There is a whole list of projects in the post above with Ken's list of thing to do pasted in it.  Pick one project, volunteer to do it and go for it.  The BoD won't hinder you or deny your help.

I do think that the current message board set-up at OUCH is a slap in the face of the members though.  It says to me that I am not worthy to know what is going on with the organization or give any input on it.  I think it is effectively killing any interest there may be on the part of the members.
Title: Re: People of OUCH
Post by Donna_H on Dec 27th, 2004, 12:38pm
Are we through yet with accusations and excuses?  I've heard them all so many times that I know what happens next.

Let's quit the replays and get busy.

I would like an answer as to why the Private BoD Business Board which was finally made public after much fall out,  was pulled from public view and hidden.

Was it because what was left of the board didn't want to answer questions?  I had a lot  of  questions, remember?  What I can't understand is why the membership didn't pick up on the problems then and demand some answers.  I can't believe that Renee is still showing up with comments after that fiasco.  It boggles my mind how we let don quit without putting up a fight to keep him........same with Steve.  These were good presidents too.  It's like we are sheep.....timid and wandering aimlessly and afraid to ask questions.

If we were to re-publish the items proposed to work on in the order in which they were presented, and worked on them one by one until they were finished, we would really have something great to boast about.  They are all sitting somewhere in the dark and nobody is working on them.

Why haven't we assigned these jobs to the numerious members of the BoD?  Is it because they still can't find time?  Then lets find some people who do have time.

Mark, you are a hard working, honest and dedicated person.   Don't you think it would help if we put the old committees back in working order, assign a chairperson who selects a committee and works thru completion the tasks that you assign them?  Don't you think monthly reports by each committee are in order?  Don't you think a monthly board meeting date should be set and if a member misses three (as used to be stipulated) they are expelled?  We aren't running a day care center.  How much can you push a volunteer?  As far as you can.  We just don't have the right people in the right places.  I know how many hours Melissa, Mast, Chuck and yourself must be putting in.  I used to do it.   What about the others?  When I was Bylaws Chairperson, I know how many hours Ozzy and the rest put in.

This unrest is not something new.  It is time to re-think what we are doing.  

I have never pinned people down before, or named names, but this might be the end of the rope and I want to see OUCH work, dammit!  If Riccardo and Simon and the others can do it, so can we!  

I want the old Private Bod Business board back up and I want people to read it, make a list of things that need to be accomplished from it and do those things before it's too late.

If membership dues are wrong, dump them and come up with another way of creating an income.  God, there's so much that needs to be done over and better.

Now that I've said my "I wants", let's hear yours.
Title: Re: People of OUCH
Post by Donna_H on Dec 27th, 2004, 12:53pm
Bob, we both know that it is me that is holding up the chapter paperwork.

Truth is, I am fighting with myself as to whether or not I want to go any further with it.  I am tired.   Tired of trying. Tired of being excluded from what should have been my business.

You know how much I wanted to initiate the very idea of chapters, how much I am aware of their importance, etc.

I am just tired of failure, lack of interest,  being excited and then dumped on, working for countless hours just for the project to be cancelled, etc..........

I guess it's time for me to stop feeling sorry for myself and get this thing done and into your hands.  Sorry for the delay.  You'll have it tomorrow.

Bob P for CEO!!!   Mark for Pres!!!!  Don for Ambassador!!!  Steve for PR!!!.  Mel for Secretary!!!  Mast for Store and Fundraising!!!  The rest for whatever they're best at.  Those without time, thanks for what you've done in the past.  See ya.
Title: Re: People of OUCH
Post by Donna_D. on Dec 27th, 2004, 1:09pm

on 12/27/04 at 11:45:38, Lizzie2 wrote:
Well I am neither a former officer nor a non-member of OUCH, but I am someone burned by the politiks and system going on.  I wasn't going to drag certain things up because I feel that there is no need to prolong anger or hurt over certain events and issues, but it's getting to the point where you are making those of us with legitimate complaints and concerns look like a bunch of not a very nice persons who sit around on our couch's posting to ch.com and do NOTHING for OUCH.

Well...that isn't correct.  Some of your BOD KNOW that isn't correct.  For some reason the two of you plus one more think that this IS the truth, and therefore feel the need to be on the attack.

When I ran for a BOD position several months back, there were two people who did not obtain a position.  I was one of them, and Bob (Alleyoop) was the other.  I won't get into anything that concerns Bob as there is no need to drag him into this mud pit.  But it was more or less politiks at work again.

I had laid outmy ideas, my connections, my abilities.  I've had experience with several non-profit organizations as well as raised money for those organizations in quite large amounts for someone of my age with absolutely no business experience or income of my own.  But I know how the NP's work.  Not only that, but I have a connection to a lawyer who suffered CH who I'm sure would have been more than happy to help in certain areas, but that is highly unlikely now.

I'm a nursing student at a center that has one of the most world-renowned headache centers in the world.  I did research for them for 4 straight months, and I know everyone personally who works there.

Oooooooooooook.  But yet, these were good reasons to be one of two not elected.

I am not getting into the copy and paste bull-shit because I for one think many things are taken out of context when that little game is played.  I'm tired of this.

I'm tired of the rude way with which officers treat members...like they are "holier than thou."  I'm not speaking of all on the current BOD and they know that.  If they don't know that, then they can contact me personally and I will reassure them of that.

But yes...I am still pulling the knife from between my shoulder blades, and yeah I'm still pissed about it.  And I feel like I wasted a huge amount of time.  Convention proposals, ideas, running for BOD.

Yes I will think twice before laying my own ass on the line (in the professional or personal sense) ever again for a "worthy cause."

And that's all I have to say about that.

L2



Carrie,

For the record.  When it came time for the BoD to discuss the candidates it was agreed upon that your exceptional and unique talents, along with your advantageous position in the medical community , that you could best serve O.U.C.H. as a member of the Advocacy Team.  If I remember correctly, you were contacted and advised of this information and the reasoning behind it.  

If there was "politicing" surrounding this, then I must have missed it.  I still think your dedication and skills are beneficial to O.U.C.H. and I hope you will consider utilizing them for the greater good of OUCH.

DD
Title: Re: People of OUCH
Post by Lizzie2 on Dec 27th, 2004, 1:20pm

on 12/27/04 at 13:09:26, Donna_D. wrote:
Carrie,

For the record.  When it came time for the BoD to discuss the candidates it was agreed upon that your exceptional and unique talents, along with your advantageous position in the medical community , that you could best serve O.U.C.H. as a member of the Advocacy Team.  If I remember correctly, you were contacted and advised of this information and the reasoning behind it.  

If there was "politicing" surrounding this, then I must have missed it.  I still think your dedication and skills are beneficial to O.U.C.H. and I hope you will consider utilizing them for the greater good of OUCH.

DD


I was then informed that I would not be a part of the Advocacy Team but that I was asked to be the liason between Jefferson and OUCH.  My "position" if we can call it that, was constantly changing, and to this day I still don't think I am a part of the Advocacy Team...or is there one?  I get lost....

At any rate...if you read the other post I started on "Losing my sanity..." you will see that my ability to be a liason with Jefferson is fastly diminishing by the minute.  haha

L2
Title: Re: People of OUCH
Post by BarbaraD on Dec 27th, 2004, 1:38pm

on 12/27/04 at 12:21:01, Bob P wrote:
Group Exemption Letter is my project.  I volunteered to do it and it is the only OUCH project I currently have in the works.  The current BoD is not holding me up on this project.  I forwarded some forms to another Chapter a while back and am waiting for their return so I can include them in the letter I will send to Mark for signature/approval.

I do think that the current message board set-up at OUCH is a slap in the face of the members though.  It says to me that I am not worthy to know what is going on with the organization or give any input on it.  I think it is effectively killing any interest there may be on the part of the members.



The GEL letter can go in with only one chapter listed. When the others get their paperwork in, they can be added at that time. As I said - it was ready in July.

I agree about the message board for OUCH. And can't understand the reasoning for wanting a new one. It looks to me like OUCH should worry about getting back in working order before it tries to put on a new face. What we've got ain't working - why would another board do so?

Where is the P&P manual that was started back in the Spring? OUCH spent about $800 to get a site for all the stuff and it would have been great -- all the accounting, bylaws, legal stuff - a place for everything -- but it's not here yet.  Is the $800 OUCH just spent on grant software going the same way or is someone actually going to try to get some grants (so far Bob P is the only one that's accomplished that feat and that was a couple of years ago).

Maybe the reason so many people have resigned is that they don't want to get bogged down in the quagmire of confussion and politics that's plagued OUCH this past year or so. Or maybe they just don't like being mushrooms.

Bd
Title: Re: People of OUCH
Post by Bob P on Dec 27th, 2004, 2:30pm
Which reminds me of a couple of things.

Donna D - The Glaxo guy I got the $2500 grant from was located in Texas.  If you want I can dig up his info and maybe you can dig some money out of him for the convention.

Donna H - The problem with the Standing Committees is that they don't always have something to do so they sit idle.  Towards the end of my term (or when I ended someone elses term) I came to believe that the way to go was to build a list of "projects" as you suggest.  Prioritize them.  Ask for volunteers to be a project team and accomplish the first assigned task.  Once that was done, ask for volunteers for the next project.  The list could always be added to or deleted from or the priorities changed.  If things went smoothly, more than one team could be at work on different projects at the same time.

I don't think OUCH is in too bad a shape.  Just need one person to step up and direct the bunch.  Assign jobs, require updates on status.

Don is right, the web site is the link to sufferers.  To restrict access is wrong.  It also needs a professional re-do.  I built the current one and it reflects just that, an amature web site from an amature web site builder.

I don't see the use for buying OUCH.com.  Seems like an uneeded expense.  The current site is high in the search engine rankings and can be made into any number of "areas".  It's also listed on many other headache site's resource pages.

Donna H - Didn't see any need to mention names on the GEL.  I'll send it when it's ready ( this week is devoted to recovery from jet-lag, finding the luggage we left in Philly last Thurday night, and cooking up a big pot of chili for the New Years Day football games).
Title: Re: People of OUCH
Post by Donna_D. on Dec 27th, 2004, 2:46pm

on 12/27/04 at 14:30:28, Bob P wrote:
Which reminds me of a couple of things.

Donna D - The Glaxo guy I got the $2500 grant from was located in Texas.  If you want I can dig up his info and maybe you can dig some money out of him for the convention.


Bob,

That would be GREAT!


One of the things I am working on is getting corporate sponsorship for the convention.  That information would be VERY HELPFUL!  

Thank You!

DD
Title: Re: People of OUCH
Post by Bob P on Dec 27th, 2004, 3:04pm
I'm sure I have the request and his info on my home PC.  I'll dig it up for you tonight.  I just asked for a $2500 unrestricted educational grant and they sent the check.  Of course I asked again the next year and they said no  (the shroom heads probably put a dent in their profits for the year).
Title: Re: People of OUCH
Post by Renee on Dec 27th, 2004, 5:07pm

Quote:
Was it because what was left of the board didn't want to answer questions?  I had a lot  of  questions, remember?  What I can't understand is why the membership didn't pick up on the problems then and demand some answers.  I can't believe that Renee is still showing up with comments after that fiasco.


I do still show up and yes, Donna H, the membership never did demand answers.  I'm with you on wondering why that is?

Instead, the lynching mob all resigned AFTER slandering my name into the ground for merely trying to light a fire and get something accomplished.

I believe some of the BOD of the past were afraid of change and growth or just didn't know where to start.  The question is now...does the current BOD know where to start to be the most effective?  I hope so and look forward to seeing those accomplishments in 2005.
Title: Re: People of OUCH
Post by Charlie on Dec 27th, 2004, 6:32pm
Whew....This thread sounds like OUCH posts

Charlie
Title: Re: People of OUCH
Post by don on Dec 27th, 2004, 7:31pm

Quote:
Don for Embassador!!!


OK. I'll start in the Southern Caribbean and work my way up.
Title: Re: People of OUCH
Post by BarbaraD on Dec 27th, 2004, 9:28pm

on 12/27/04 at 18:32:55, Charlie wrote:
Whew....This thread sounds like OUCH posts

Charlie



First time in a long time so many people have shown ANY interest. Communication is everything....

Hugs BD
Title: Re: People of OUCH
Post by Bob P on Dec 28th, 2004, 8:48am
Donna D,
I sent you the grant info in your IM.  You may even interest them more by asking if they have a "Patient Assistance" rep who would speak at the convetion (what Glaxo can do to help and maybe how to deal with insurance companies).
Bob


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