Yet Another Bulletin Board

Welcome, Guest. Please Login or Register.
Apr 27th, 2024, 12:04am

Home Home Help Help Search Search Members Members Member Map Member Map Login Login Register Register
Clusterheadaches.com Message Board « People of OUCH »


   Clusterheadaches.com Message Board
   New Message Board Archives
   2004 Posts
(Moderator: DJ)
   People of OUCH
« Previous topic | Next topic »
Pages: 1 2 3  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print
   Author  Topic: People of OUCH  (Read 2968 times)
BarbaraD
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Hugs to ya

   
Email

Gender: female
Posts: 5164
Re: People of OUCH
« Reply #25 on: Dec 26th, 2004, 7:34pm »
Quote Quote Modify Modify

on Dec 26th, 2004, 11:27am, don wrote:

 
Anyone read the "Whats New" page lately?

 
 
Yep -- not much is it??? Good call Don..
 
Hugs BD
IP Logged

What don't kill ya, Makes ya stonger!

don
Guest

Email

Re: People of OUCH
« Reply #26 on: Dec 26th, 2004, 7:37pm »
Quote Quote Modify Modify Remove Remove

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.
IP Logged
Renee
CH.com Alumnus
New Board Hall of Famer
USA 
*****




May we all find some pf time!  Is it summer yet?

   
Email

Gender: female
Posts: 1060
Re: People of OUCH
« Reply #27 on: Dec 26th, 2004, 8:09pm »
Quote Quote Modify Modify

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.
IP Logged

23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!

kissmyglass
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Don't Mix Triptans

   
Email

Gender: male
Posts: 1398
Re: People of OUCH
« Reply #28 on: Dec 26th, 2004, 8:16pm »
Quote Quote Modify Modify

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
IP Logged

"It does so fucking look like her" - Picasso
[img][/img]
don
Guest

Email

Re: People of OUCH
« Reply #29 on: Dec 26th, 2004, 8:22pm »
Quote Quote Modify Modify Remove Remove

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.
« Last Edit: Dec 26th, 2004, 8:32pm by don » IP Logged
Not4Hire
CH.com Alumnus
New Board Hall of Famer
USA 
*****




...WAS PF since Oct.'02, but ...oh my...(CBusters)

   
Email

Gender: male
Posts: 1190
Re: People of OUCH
« Reply #30 on: Dec 26th, 2004, 8:46pm »
Quote Quote Modify Modify

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....
IP Logged


Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
don
Guest

Email

Re: People of OUCH
« Reply #31 on: Dec 26th, 2004, 9:20pm »
Quote Quote Modify Modify Remove Remove

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.
IP Logged
john_d
Guest

Email

Re: People of OUCH
« Reply #32 on: Dec 26th, 2004, 9:54pm »
Quote Quote Modify Modify Remove Remove

on Dec 26th, 2004, 8:22pm, 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....?
 
« Last Edit: Dec 26th, 2004, 9:56pm by john_d » IP Logged
don
Guest

Email

Re: People of OUCH
« Reply #33 on: Dec 26th, 2004, 10:17pm »
Quote Quote Modify Modify Remove Remove

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.
« Last Edit: Dec 26th, 2004, 11:07pm by don » IP Logged
Charlie
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Happy to be here

135447360 135447360   mondocharlie   mondocharlie
Email

Gender: male
Posts: 14968
Re: People of OUCH
« Reply #34 on: Dec 27th, 2004, 3:19am »
Quote Quote Modify Modify

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
IP Logged

There is nothing more satisfying than being shot at without result---Winston Churchill
TxBasslady
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Bass fishin' is a h00t  It's the catchin' that sux

   
Email

Gender: female
Posts: 3201
Re: People of OUCH
« Reply #35 on: Dec 27th, 2004, 3:30am »
Quote Quote Modify Modify

on Dec 26th, 2004, 10:17pm, 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
 
IP Logged

How lucky I am... to have known someone who was so hard to say goodbye too.

Take a kid fishin
www.takemefishin.org

I adopted a Vietnam POW/MIA from El Paso, Texas!
Donna_D.
CH.com Alumnus
New Board Hall of Famer
USA 
*****




OUCH needs volunteers

  smileyone1968@yahoo.com  
WWW Email

Gender: female
Posts: 2618
Re: People of OUCH
« Reply #36 on: Dec 27th, 2004, 4:27am »
Quote Quote Modify Modify

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 Dec 3rd, 2004, 10:04am, 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 Nov 19th, 2004, 12:56pm, Mark C wrote:
O.U.C.H, 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, Harvard Medical School.  
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]
« Last Edit: Dec 27th, 2004, 5:54am by Donna_D. » IP Logged

The information contained above is for the expressed use of fellow clusterheads and their supporters. Any misuse of this information by any of my "Ex's" is considered to be creepy and a form of harassment and will be duly noted by the ch.com webmaster Tongue
Donna_D.
CH.com Alumnus
New Board Hall of Famer
USA 
*****




OUCH needs volunteers

  smileyone1968@yahoo.com  
WWW Email

Gender: female
Posts: 2618
Re: People of OUCH
« Reply #37 on: Dec 27th, 2004, 4:41am »
Quote Quote Modify Modify

(continued from previous post)
on Oct 27th, 2004, 5:47pm, 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 Dec 26th, 2004, 9:20pm, 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 Dec 26th, 2004, 7:37pm, 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 Dec 25th, 2004, 3:57pm, 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 Dec 25th, 2004, 6:42pm, 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

« Last Edit: Dec 27th, 2004, 7:25am by Donna_D. » IP Logged

The information contained above is for the expressed use of fellow clusterheads and their supporters. Any misuse of this information by any of my "Ex's" is considered to be creepy and a form of harassment and will be duly noted by the ch.com webmaster Tongue
BarbaraD
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Hugs to ya

   
Email

Gender: female
Posts: 5164
Re: People of OUCH
« Reply #38 on: Dec 27th, 2004, 7:32am »
Quote Quote Modify Modify

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
IP Logged

What don't kill ya, Makes ya stonger!

Donna_D.
CH.com Alumnus
New Board Hall of Famer
USA 
*****




OUCH needs volunteers

  smileyone1968@yahoo.com  
WWW Email

Gender: female
Posts: 2618
Re: People of OUCH
« Reply #39 on: Dec 27th, 2004, 8:21am »
Quote Quote Modify Modify

on Dec 27th, 2004, 7:32am, 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


IP Logged

The information contained above is for the expressed use of fellow clusterheads and their supporters. Any misuse of this information by any of my "Ex's" is considered to be creepy and a form of harassment and will be duly noted by the ch.com webmaster Tongue
Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Re: People of OUCH
« Reply #40 on: Dec 27th, 2004, 8:53am »
Quote Quote Modify Modify

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...
IP Logged





don
Guest

Email

Re: People of OUCH
« Reply #41 on: Dec 27th, 2004, 8:59am »
Quote Quote Modify Modify Remove Remove

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.
« Last Edit: Dec 27th, 2004, 9:03am by don » IP Logged
john_d
Guest

Email

Re: People of OUCH
« Reply #42 on: Dec 27th, 2004, 9:44am »
Quote Quote Modify Modify Remove Remove

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.
 
      
 
 
 
« Last Edit: Dec 27th, 2004, 10:04am by john_d » IP Logged
don
Guest

Email

Re: People of OUCH
« Reply #43 on: Dec 27th, 2004, 9:51am »
Quote Quote Modify Modify Remove Remove

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

 
How the fuck would I know ?
 
What a fucken jerk!
 
IP Logged
john_d
Guest

Email

Re: People of OUCH
« Reply #44 on: Dec 27th, 2004, 9:54am »
Quote Quote Modify Modify Remove Remove


 
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.
« Last Edit: Dec 27th, 2004, 10:09am by john_d » IP Logged
don
Guest

Email

Re: People of OUCH
« Reply #45 on: Dec 27th, 2004, 10:11am »
Quote Quote Modify Modify Remove Remove

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.
IP Logged
Lizzie2
CH.com Alumnus
New Board Hall of Famer
USA 
*****




"L'Chaim"~Hebre w Toast~"To Life"

  Lizzie52004  
Email

Gender: female
Posts: 4458
Re: People of OUCH
« Reply #46 on: Dec 27th, 2004, 10:12am »
Quote Quote Modify Modify

on Dec 27th, 2004, 9:54am, 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!!!   Grin
 
Hugz,
Lizzie Smiley
IP Logged





john_d
Guest

Email

Re: People of OUCH
« Reply #47 on: Dec 27th, 2004, 10:27am »
Quote Quote Modify Modify Remove Remove

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.  Smiley  
 
 
IP Logged
Donna_H
CH.com Alumnus
New Board Junior
USA 
**




   Donna's doodles.     All's fair that ends well.

   
Email

Gender: female
Posts: 74
Re: People of OUCH
« Reply #48 on: Dec 27th, 2004, 10:49am »
Quote Quote Modify Modify

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.
IP Logged

Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.

One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
Mark C
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Onward through the fog.

   
Email

Gender: male
Posts: 2660
Re: People of OUCH
« Reply #49 on: Dec 27th, 2004, 11:12am »
Quote Quote Modify Modify

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!   Grin
 
In Loving Service,
Mark Cox
OUCH President
 
 
IP Logged


Click The Flag
Pages: 1 2 3  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print

« Previous topic | Next topic »


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.


©1998-2010 Web Vision Enterprises All rights reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

test rss