Those of you that have not been on the O.U.C.H. web site, and read the posts, NEED to go and read!

I am SO pissed off, and depressed over this stupidity, that I am afraid to write any of my thoughts down here, as I would probably get censored or at least locked down.

Deej, I know you are not happy about us discussing O.U.C.H., here on your site, but this information MUST be put out, seeing how the O.U.C.H. leadership has kept us in the dark for so long, and they have even virtually disappeared.

Log in, people, and look what they are thinking of doing!

Chuck (who will AGAIN be accused of being a rabble rouser ...)

Cal OUCH will also be disappearing soon.

I think OUCH tried too hard to be a BIG organization.  All the effort had to be directed toward meeting the legal requirements of the org. rather than getting things done for clusterheads.

What is it clusterheads want OUCH to do anyway?

I have received a couple of PM's asking what I am talking about, and where it is.  (Typical of that confusing site)

Follow these steps:
Click on the OUCH website button on your left edge of this screen.
Click on Members' Area Login
Click on Business Board (you may need to log in again)
Click on OUCH news & updates
Read post Notice to Membership - Convention dated June 8th

I have not been able to log in there for well oer a year.sad but true......I have no clue what's going on, ande I am finally comfortable with that. I Began by e-mailing the powers that be for my log in info-regularly, but, I gave that up after being ignored repeatedly.

Acourse, that's just me.........

Cathi

The "original" purpose was to get Clusterheadaches KNOWN as a disease and make doctors aware that we were suffering. To get some research started on finding a cause thus coming closer to a cure.

A lot of work went into making it a nonprofit and legalities HAD to be aherred to (whether we liked it or not). The ball fell to a "few" people to do most of the work and take the "criticism" of the rest.

Members were involved in the beginning and Bob P had a website where everyone could have a say (whether you agreed or not, but everyone had a say in everything). I remember a LOT being accomplished - Letters to employers, research to take to doctors, O2 research - for all to print and read. This was posted on ch.com as well as our OUCH website.

We gave support to each other and conventions were something to look forward to - just meeting another Clusterhead was something we all looked forward to doing.

Ideas were thrown out freely and some of them stuck. A doctor list (which still is in existence today) was suggested and posted almost immediately. A lot of good ideas came from OUCH that are still here today.

My personal opinion - OUCH is still a good organization, but needs to go back to its roots and undergo some reorganization and remember it's original purpose. It's members are its backbone and they need to be involved and informed.

Barbara D

Mrs Deej wrote on Jul 1^st, 2009 at 1:27pm:

I just spoke with Royce personally on the phone and gained permission to post his email that was sent out. I just spoke with Royce personally on the phone and gained permission to post his email that was sent out. Quote: As you may have heard through the cluster headache grapevine, I was layed off by Linde Healthcare, and, will not be attending the OUCH meeting in St. Louis. It is not fully clear yet, how the work I was doing will be picked up and pursued within Linde. My hope is that Linde will offer me a consulting contract to finish much of what I had started, such as the 4-5 survey based journal articles with Dr. Rozen, the 3 Patent applications on new devices/methods to further enhance oxygen therapy beyond the demand valve based therapy I was working on with Peter and Michael, development of those devices in Linde, and, supporting Dr. Rozen’s clinical study of the oxygen demand valve based DEVO2THERAPY. However, I wanted to make sure you all knew, that the 2 abstracts on the survey data Dr. Rozen and I previously submitted to the International Headache Congress were accepted as posters.  Dr. Rozen will be presenting them.  The meeting is this September in Philadelphia.  As soon as the abstracts are officially published in August or September, OUCH, CH.com and other websites should be able to post them for everyones education/information. It has been very rewarding and great fun meeting and working with all of you on various cluster headache related efforts. Needless to say, I am very disappointed that I did not get to continue and finish my efforts on your behalf.  My being layed off when all of the cluster headache projects were at such a major stage of moving forward, was obviously not my decision and I must say came as a shock to me, and, others I have worked closely with in Linde Healthcare. Hopefully this personal statement will alleviate any questions or rumors. Steph

Bob, asking what do clusterheads want OUCH to do..that's a good question.  

This quote above is from the St. Louis 2009 thread, posted by Stephanie.  Look at the bold.  The work initiated last year with Royce Fishman was, finally, a start in gaining ground.  I'm not here to speak on behalf of anyone FYI, and neither for nor against OUCH.  As OUCH members, it makes sense that I would log in to the OUCH website and see what's going on in the member's section.  I do think however, that a mass email might have been sent out to alert folks as to the agenda, as has been done in the past.  As far as I recall, OUCH has a spokesperson to make announcements, or the mass email is sent out by the webmaster.  

I'm sorry too Deej, I just feel this is important for this community.  I do realize, however, a handful of people can only do but so much. OUCH hAS grown, in spite of critics, obstacles, illnesses, job loss, family deaths, other crises... you name it.  Crossing T's and dotting I's may be looked at as a bureaucratic waste, but when you're really wanting to make a larger impact, it's a necessary evil, in order for it to be taken seriously.  

Last year, OUCH took a huge step forward, in my opinion, having obtained the support of Linde company, and informative and heartfelt presentation by both Royce Fishman and his colleagues, as well as world-reknowned Dr. Goadsby at the Convention.  Not to mention, development of their masks (Linde), particularly beneficial for clusterheadache sufferers, which many people, members and non-members alike, are now using!  

Sufferers and Supporters alike were urged to move, do something- I, and I believe felt the org was on the cusp of a new era. By no means did I think it was the beginning of the end.  

Anyone can go ahead and blast me or pick me apart, I just was one of those who worked for the org, and I can tell you it's no picnic trying to get things done in an org when you're on the defensive for one reason or another.  Getting kicked in the can afterward hurts like hell, and I know I'm not alone.  But I STILL don't think shutting things down is the right thing to do.

I love this community, and OUCH is an extension thereof....I would never have thought everyone would be so near and dear to me.

I don't think I've said anything out of line.. just speaking from the heart, after all, I still do have one.

Pepp

Cathi_Pierce wrote on Jul 2^nd, 2009 at 9:33am:

I have not been able to log in there for well oer a year.sad but true......I have no clue what's going on, ande I am finally comfortable with that. I Began by e-mailing the powers that be for my log in info-regularly, but, I gave that up after being ignored repeatedly. Acourse, that's just me......... Cathi

Not just you Cathy...

I read about this almost a month ago.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Here is my take. We can complain about where OUCH is today all we want. The bottom line, in my opinion, is that the 3-4 people who have been trying to keep it afloat are worn out.

They have elections begging for help and no one steps forward.  I don't blame the ones left holding the bag to want some some help; or shut it down. But before we tell them what we expect OUCH to do, be prepared to take the reins because they may hand it to you.

If there is not interest from the community, whats the point?

I'll say only this - The convention is the perfect time and place to talk about all of this, and I am looking forward to a spirited discussion. I don't even care that there won't be any guest speakers. This stuff needs to be thrown out onto the table and sliced, diced, and cut three ways. Is running a medical advocacy organization with nothing but the people who suffer the damned disease the way to go?

Let's talk about it in St. Louis.

What about the people who can't make it to St. Louis, for one reason or another?  I certainly cannot go this year.  I have been going since the Convention in NY, but this year, not possible.  

And Jimi, I love you my friend, but it's a few more than just 3-4 people, although still a small group . You know that officially people served as terms allowed, but unofficially, others helped to make things happen.  

When folks want to step down from official capacity, why not make an announcement to that effect, ahead of time, instead of one about a pending shutdown altogether.

Wish I could be there this summer, but there are circumstances.

Would it be possible to set up one of the sessions in STL as a conference call, to give members who can't be there the opportunity to voice their opinions? Maybe a live chat session with one computer projecting the screen so all STL attendees can see what's going on?

I'm just throwing ideas out there....

SEVERAL months ago this agenda was put up on the convention page for everyone to read.  I even posted a reminder down below on the convention page which had 70-something hits but no replies.

I'm sorry if you're just now seeing it Chuck.

 This is merely a meeting/discussion for the membership to talk about what they want the future of OUCH to be.  

All of the other comments have validity too.  There have been errors and omissions every year, and as Jimi has pointed out a few individuals can not keep the ship afloat.  Only one new person has offered to step forward and join the board this coming year.  ONE PERSON!    OUCH has 3000 members.  Only 70 bothered to vote in last years elections.

Those coming to the Convention can participate in determining the future of OUCH.  Leave the wisecracks and attacks on the past at home and come with ideas and offers to help the future.  

Linda

Quote:

When folks want to step down from official capacity, why not make an announcement to that effect, ahead of time, instead of one about a pending shutdown altogether.

And maybe I was speaking out of turn because I don't know of any officials planning on stepping down.  Like Brew said, it definetly needs to be laid out on the table to see how the board feels now, what the problems they are having, if there is any interest on new people stepping forward etc. It is too bad there will be such a small group for the discussion.  It will be interesting.

Uh..the only one stepping down is Mike Day, our president and that is because his 2-year term is up.  Helen, Liz and one new person are running, and Jim, Paul Logue, myself and Patrick have one more year to serve.

Maybe OUCH is trying to do too much.  Perhaps pick one pet project and work only on that.  It's true OUCH is kept afloat only by a few people.  It's agenda should reflet that.

Kinda nice to have an open forum like this to discuss it in.

Jimi wrote on Jul 2^nd, 2009 at 10:53am:

And maybe I was speaking out of turn because I don't know of any officials planning on stepping down.  Like Brew said, it definetly needs to be laid out on the table to see how the board feels now, what the problems they are having, if there is any interest on new people stepping forward etc. It is too bad there will be such a small group for the discussion.  It will be interesting.

Jimi, I know as much as you do.  It was a suggestion in reference to individuals who might feel the need to step down because they've given all they can - not a reference to any one person in particular.  

Thanks Pepp...

I couldn't have said it any better... In any organization, if you're a leader, you must wear a Bullet Proof Vest or coat of armor at all times.

I’m on the boards of “The TIME CENTER (Men Homeless Shelter) & GCAP (Greater Community Aids Project)"; and I'm hit with negatism all the time. But I just keep smiling and pushing forward. Because I realize that "Tearing someone else down, is the only way some people can build themselves up"

We can sit back an criticize or we can work together. I have gotten so much out of OUCH,. from the written info to the Speakers.  

Taking a quote from a speech I gave at one of my Fraternal Organizations many years ago: "ORGANIZATIONS DO NOT DIE, WE KILL THEM, ORGANIZATIONS ARE NOT LIVING THINGS. WE MAKE UP THE ORGANIZATION".

I am willing to do what ever I can to help this organization survive.

I don't have much, (in fact I'm as broke as the 10 commandments :)) but I make sure that I hit that PayPal button at the bottom of OUCH & CH.Com a couple times a year... The Survival of these two great entities should not be placed  on the shoulder of one or two people; if each of us that use these sights and benefit from them, would donate $10, 15 or what ever we can each year; WE WANT DIE, WE WILL MULTIPLY!!

Peace & Blessings
LadyLuv

Mr. & Mrs. Deej, I Pray that I'm not in trouble for writing this, but these to entities means a lot to me... Just putting my 2cents in...

I have got but one thing to say publicly on this subject.....

What you plant, you will harvest.

B

Bob P wrote on Jul 2^nd, 2009 at 11:09am:

Kinda nice to have an open forum like this to discuss it in.

THIS is the key of what brought O.U.C.H to the point that it is now.  Once the board shut down to open discussion the membership felt left out, and uninformed.

It was locked down, at the time, due to the fact that there was so much nastiness and name calling on the board, and that IS true.  There was a lot of that.  BUT, there are better ways to keep the discussions flowing, than locking it down.  

I think Deej and Stephanie have done a wonderful job with setting up the moderators, and how they are used on this site (even though I was against it in the beginning).  Why can't O.U.C.H. do the same thing and get the membership involved again?

Chuck

Quote:

Once the board shut down to open discussion the membership felt left out, and uninformed.

Bingo !

Funny, I just had a conversation with a past OUCH officer about this today.

Nobody seemed to want to admit it, but OUCH, the potential powerhouse, died a long time ago. Now it's just a vehicle for an annual meet and greet.

In order to get serious involvement from members, you have to make them feel involved. I faded away from OUCH when the open discussion stopped.

Yes, I remember why it happened and still disagree with that decision today. I politely voiced that opinion back then and was more or less told that member opinions didn't count. I was also dead against making membership free - still feel that way.

The sad thing is that it could be revived with far less work than it took to create it. The damage (largely false perception) that was done previously runs so deep that no one, including me, wants to bust their butts to make it happen.

One strong leader, with a narrowly focused initial goal could bring 'er back to life in 6 months. It's strictly a matter of trust. How many of you can honestly say that you have a warm and fuzzy feeling about OUCH?

Change that one aspect and the dynamo starts spinning.

Respectfully,
Marc

The message board was not put on the new website, due to the long and continual flame fest directed at the OUCH BoD that defined it on the old website. To call it open discussion among OUCH members is a misnomer. Also, when going after grants, corporations would check out that message board. It was the first thing seen on the website. I can only imagine what they thought, seeing that stuff. Officially, but politely, turning us down for other reasons. I can only imagine what new members thought of it.

I don't know of any other non-profit organizations that have a message board on their websites. Regular announcements yes. Is it just that we are used to posting to CH.com?

I think OUCH could begin again, but I believe it will take a narrowly focused, motivated team, with a strong leader, to make it work. A team that is willing to make the time and work together.

I agree with what Jim posted on OUCH.

Many members have not gotten a reply when they couldn't log into OUCH. How many members have not even bothered to check in with OUCH?  There has been appeal after appeal for volunteers to work with OUCH. For member involvement.

It does appear OUCH is in a stagnant state. I too look forward to a discussion in St. Louis. Maybe it would be possible to have streaming video so that members unable to attend will be able to see, and participate in the discussion via webcam, or an online meeting room.

I‘m concerned about the future of OUCH and it’s obvious from all the comments in this thread, many others are as well…

While I understand Jim’s post on OUCH and some of his frustrations, I have a different view.   And, as I will be unable to attend to take part in the discussions on the future of OUCH,

and yet I would have loved to have a venue so we that don’t attend the convention can take part in the discussion…. like on OUCH message board…..

I’m moved to post the following to ensure there’s greater understanding of OUCH, some of its recent accomplishments, the art of the doable when there are clear goals, and why we need an organization like OUCH.

I have been part of OUCH from the time I started my “journey” with CH in early 2006, initially as an inactive spectator, and for a short time as a member of the OUCH Board of Directors and an active collaborator in some very significant initiatives and achievements.  

These initiatives started in October 2006 when I asked Pete Batcheller, “Batch” to join me in developing a User’s Guide for oxygen therapy as none existed.  We collaborated on a six-month effort that resulted in development of the Supplemental User’s Guide to Oxygen Therapy that is still available for download on the OUCH web site.  

Annette, Chuck, Svenn and some more good people were actively involved in development of this User’s Guide and helped to make it a very useful and comprehensive primer for people who never received the needed instruction on how to use oxygen therapy from their doctors or neurologists.  It was well received and it’s been translated into several languages for use across Europe.

We also formed and implemented the OUCH O2 User's Support Team and “helpline”  where we responded to many questions and requests for information about oxygen therapy.  Both Pete and I received several compliments on our responses.

It was the User’s Guide that attracted the attention of the health care managers at Linde Gas Therapeutics in Munich and that led to the initial contact by Royce Fishman in July of 2007.   After calls from Royce Fishman to me and Pete, I met with Royce and Linde Health Care Managers in August for a daylong meeting in Zurich Switzerland (not as part of OUCH at that time) and Pete joined for a part of that meeting over Skype.  

This led to another series of meetings with Royce and Linde Home Care Managers in Switzerland and the USA followed rapidly by another collaborative effort where Linde LifeGas and Linde Gas Therapeutics provided support for a “Quick Look” pilot study of a new method of oxygen therapy Pete and I (I only did some math work and math analysis, Pete did most of the work….) had been working on for several months.   The pilot study started in August of 2007 and by late August we had modified the study protocol and therapy procedures to include use of a demand valve provided by Linde.

Based on the initial success of this pilot study, Helen Williams “LeLimey”, Svenn Thørn, Pete and I were invited to attend a second meeting with Royce and the Linde Home Care Managers in Munich, this time as members of the OUCH BoD
but not representing OUCH.

That meeting resulted in a lot of actions undertaken by us as members of OUCH, Linde LifeGas here in the US and Linde Gas Therapeutics in Europe.  These actions have benefitted and will continue to benefit cluster headache sufferers all over the world.  

Many of the actions taken by Linde as business decisions are still covered by non-disclosure agreements so they cannot be discussed, but the others you’ll recognize.  The O2PTIMASK and Demand Valve Kits as well as the Cluster Headache Survey are some of the most obvious.  As members of OUCH we made this happen.  

There is also a new demand valve that Helen, Svenn, Pete, and I had the opportunity to evaluate and comment on that Linde will market later this year.  The not so obvious results of this meeting and others I had with the Linde Home Care leadership in Munich and Switzerland was securing an agreement for Linde LifeGas to serve as a sponsor providing funding to both OUCH and CH.com.  

Pete and I were also instrumental in securing support and funding from Linde Home Care for Dr. Rozen to conduct an official study of the demand valve therapy.  I’m told this is still on track and scheduled to start in January 2010.  We are confident the results of Dr. Rozen’s study of the demand valve therapy (DEVO2THERAPY™) will confirm the results from our initial pilot study.  When this happens and the results are published, we are equally confident this will benefit cluster headache sufferers with an improved method of aborting their terribly painful attacks.  Again, all this happened while we were active members of the OUCH BoD.  

I know Royce wanted to present the results of the Cluster Headache Survey in St. Louis in return for the outstanding support from over 1130 survey participants.   When it became obvious he couldn’t attend, he asked Dr. Rozen to present the results.  Dr. Rozen passed his regrets as he couldn’t attend due to previous commitments and suggested Pete present the results as he has been working with Royce analyzing the survey data.  Pete agreed and Royce made the offer to OUCH, but by then the convention agenda had been overtaken by events…

I left OUCH active collaboration due to “personal” reasons…. but I still continue to push (with Pete) the O2 Agenda….. and actively look for “money” to help our cause…… for me mainly O2 therapy…

I believe we need OUCH!   I also know it takes a 100% team effort to attain the kind of goals that makes OUCH so important to all of us.  This isn’t something that can be accomplished by a few while others sit on the fence and don’t take an active role or in some cases have good ideas but don’t follow up with the needed support, or worse yet, just simply criticize… without taking any action!

It’s difficult enough trying to push an agenda in support of cluster headache sufferers.  The fact that we suffer from an obscure orphan syndrome and there is so much to do requires a level of dedication and commitment that most of us simply cannot provide… we do have bills to pay…

Look at the interest most of us show in OUCH… the participation in the elections…. or trying to take an active role…

OUCH, I Believe, you try and try hard…. with a full engagement… love, care and dedication…. I do not always agree with some of the policy….  or ways….. but in order to get some change I would need to engage, and try to get the change from within…. and not just sit and have ideas with out the interest to help and do!

I will not (unfortunately) be at the convention, due to personal priorities…. But OUCH you have my support…  in whatever way you choose to go…

Michael

First, I apologize Steph and DJ, but there is no way to post/ask/reply to the info on the OUCH boards.

When I read the post on the business board, some serious alarm bells went off.


Marc wrote on Jul 2^nd, 2009 at 8:43pm:

In order to get serious involvement from members, you have to make them feel involved. I faded away from OUCH when the open discussion stopped. Respectfully, Marc

You are correct, member involvement is essential, and to achieve member involvement, the members have to feel like they CAN be involved.

This brings me to what set off alarm bells:


Quote:

We wish all OUCH Members could participate.  It is a very important subject; the conversation will undoubtedly have many twists and turns and thus, will require face-to-face sharing.  We respectfully ask that this be an in-person at Convention discussion.  We are planning on this being moderated to enable an orderly and a semi-formal meeting.  We must agree on the outcome for OUCH by convention’s end.

While I understand that issues addressed at the Annual General Meeting are handled much easier and more efficiently when done with all parties present face to face, I cannot see how something of this magnitude would/could be limited to those select few who are fortunate enough in this economy to have:
a) the $100 registration fee
b) the several hundreds of dollars required for travel and   accommodations as well as other expenses

The above quote from the OUCH business board, tells me that only the members who attend the convention will be allowed any input as to the future of OUCH, whether it will cease to exist, reorganize, or any other potential solution.  Additionally, if OUCH does dissolve, the funds will then have to be dispersed - again, my interpretation of the above statement indicates that only the members that are in attendance at convention will have any say in where those funds are dispersed to.

I may be interpreting the quote entirely wrong, and I hope I am.  
Even if I had the money for travel and accommodations, the $100 registration fee seems a bit high to me, considering the speaker for the technical sessions won't be speaking.  It comes across as having to pay $100 to attend a meet and greet;  In the past, the registration fee went to pay for the goodie bags, banquet, entertainment, speaker fees and transportation, facility rentals (conference & hospitality rooms as well as any equipment rentals) and T shirts.  I don't remember ever seeing a portion of the registration fee listed as the fee to attend to the OUCH meetings.   Again, I may well be misunderstanding, and hope I am, but for me, the wording above indicates that the only way to have input into the future of OUCH (or its demise) is to pay the $100 AND be in attendance.

Any clarification on this issue would be much appreciated.  Having volunteered with OUCH for many years in different capacities, I am well aware of the need for unification.  Please know that I am not asking to try and cause trouble or create discord.  I've personally given much of my heart to OUCH, and do not want to see the efforts and hard work of ALL who volunteered over the years to come to an end if there is another possible solution;  I also don't want to see those same volunteers excluded from the process because the current economic crisis prevents them from attending.

Cat

Cat,
I can't say this is 'the plan' as I have not a clue myself, since I am one of the 'shutout' members of OUCH that never received my log-in info as requested. Now I see I wasn't the only one.

While I realize not everyone can make it to the convention, a discussion HAS to begin as to the future of OUCH or its dissolution.
I think the discussion needs to BEGIN in St Louis, MO - and then overflow here to the board, maybe DJ can put a sticky post up for everyone to respond to - with two rules: no fighting or name calling, and - focus on solutions instead of dragging old problems through the mud.

This is just my 2 cents, but we have to start somewhere before it winds up going nowhere and, what so many people put their heart soul and time into, will just vanish.

I, for one, would like to see OUCH survive and move on with its original vision, expand; but yes, it is going to take people willing to step up to the plate and take action. That is something I swore I would never do, but we will see how things go in St Louis.

Everyone should let their voices be heard even though they can't make it to the convention. But, the discussion HAS to start somewhere.

Just a thought.

Concerned,
Carl D

First, a "thank you" to Chuck for bringing this to the forefront.

Second, this is not an attack on anyone from the BOD of OUCH, nor should it be constued as one.

I am one of those who has never been able to participate in OUCH.  I don't know why, but no matter how many times I have tried to register since the message board was shut down I cannot get on.  I have tried under different names, passwords, etc, but have not been able to participate in any way.  

I understand those who serve on the board also have a life to live outside OUCH, and I understand they have for the most part done a pretty good job working to get us the attention we need from the medical community.  I am not unappreciative at all.  That being said, it was alluded to earlier that only 70 people voted in the last election.  I would have made 71 if I had been allowed to participate.

Jerry

Carl, I need to clarify a little;  Thank you for your comments, as I didn't realize they might be seen as not wanting the discussion to begin;

I agree entirely that the discussion needs to be had.  The AGM in St. Louis is the logical place and time for that discussion to begin and take place.

My concern is that, as stated in the OUCH BB Post (I've quoted it at the end of this post) is that not only will the discussion begin in St. Louis, but the desire is to begin AND complete the discussion.  With only 43 listed attendees, I find it alarming that so few members will have the ultimate say in the future of OUCH (specifically if OUCH is to be dissolved) ;  

I would think that there are other potential solutions for engaging more than the 43 convention registered members in the discussion; especially when the topic of discussion is of major significance to all members, and CHers in the US.

Cat

This is quoted from the OUCH Business Board on 06/08/09 at 11:02:31


Quote:

Below is a notice from the Board of Directors on the Agenda at this year's Convention.  This will be the opportunity for Members participate in the planning of the future of OUCH. Jim Welch Treasurer Convention Chair Notice to OUCH Membership The OUCH Board of Directors reminds all OUCH Members that discussions on the “Future of OUCH” will be held on Friday and Saturday at Convention 2009. To be discussed:   Should OUCH continue to operate? OR.. How should OUCH continue to operate? Please plan to Register and attend to voice your opinion and your suggestions. Back ground – OUCH has been unable to progress since its inception, and it becomes more difficult each year.  Every administration has served while under attack.  Some administrations lasted only months, one lasted two years.  None has made any significant progress.  Behind the scenes issues and online open attacks have paralyzed every administration from accomplishing anything beyond planning the next convention.  There have been lots of proposals, suggestions, ideas and starts, but no completions of any consequence, save for a couple of convention grants.  Every administration has been hampered by some Board members that would not perform and by individuals that would volunteer for committees or tasks then do nothing and lots of kibitzers (Those looking in from the outside throwing suggestions or complaints but not willing to get involved themselves).  This unfortunately diminishes the few real efforts that have been given.   The Options -     1) OUCH could continue as in the past.  (But then - who would be willing to be attacked at every effort.  And is that just stalling the inevitable?)     2) OUCH could try to reorganize.  (But who has the background and willingness to do it, what would be the changes and who would support the changes.)     3) OUCH could shut down.  (Anyone could organize ‘Meet & Greets’ as that really seems to be the prime interest of most members.) (If OUCH folds it must then turn over its funds to another legal 501(c)(3) nonprofit organization, preferably in a like field.)   We wish all OUCH Members could participate.  It is a very important subject; the conversation will undoubtedly have many twists and turns and thus, will require face-to-face sharing.  We respectfully ask that this be an in-person at Convention discussion.  We are planning on this being moderated to enable an orderly and a semi-formal meeting.  We must agree on the outcome for OUCH by convention’s end.

I couldnt get onto OUCH to read this, but I have to say that I am sorry I read this thread.  I have not gotten very excited to go to St Louis this time and now I am almost sad to be going..  I am so excited to see some people and very sad I wont see others but this kind of stuff makes me sick.

I want to say thank you to the OUCH people who work very hard.  I havent done any work for the group, so I can not complain about anything you all have done or havent done.

I have no ideas on what to do with OUCh, but I hope to show up with open ears, an open mind, and open heart after a visit to the ego closet, where I hope I can check my ego and focus on the best interest of the group.

For those of you who cant go, I wonder if we can work with skype to make you all involved. I will try and tweet at the conference.  I will be at the conference from Friday on (assuming travel goes well), so you can follow my tweets, however that works....  

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Anyway, thats all I got.

I joined OUCH when it was just forming, when it still had an anything goes messageboard that was inhabited mostly by some high school kids from this board. If the new OUCH is anything like the original OUCH, I think it should be allowed to die.  

Quote:

Back ground – OUCH has been unable to progress since its inception, and it becomes more difficult each year.

You've got to be kidding me? Unable to progress since inception?

If my history is correct OUCH started in a garage. Wasn't last years speaker Prof. Goadsby?

Unable to progress?


Quote:

O.U.C.H. Website Ranked #1 Cluster Headache Website A study published Nov 13, 2007 in  "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors.  While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.

catlind wrote on Jul 3^rd, 2009 at 3:30pm:

This is quoted from the OUCH Business Board on 06/08/09 at 11:02:31 Quote: Below is a notice from the Board of Directors on the Agenda at this year's Convention.  This will be the opportunity for Members participate in the planning of the future of OUCH. Jim Welch Treasurer Convention Chair Notice to OUCH Membership The OUCH Board of Directors reminds all OUCH Members that discussions on the “Future of OUCH” will be held on Friday and Saturday at Convention 2009. To be discussed:   Should OUCH continue to operate? OR.. How should OUCH continue to operate? Please plan to Register and attend to voice your opinion and your suggestions. Back ground – OUCH has been unable to progress since its inception, and it becomes more difficult each year.  Every administration has served while under attack.  Some administrations lasted only months, one lasted two years.  None has made any significant progress.  Behind the scenes issues and online open attacks have paralyzed every administration from accomplishing anything beyond planning the next convention.  There have been lots of proposals, suggestions, ideas and starts, but no completions of any consequence, save for a couple of convention grants.  Every administration has been hampered by some Board members that would not perform and by individuals that would volunteer for committees or tasks then do nothing and lots of kibitzers (Those looking in from the outside throwing suggestions or complaints but not willing to get involved themselves).  This unfortunately diminishes the few real efforts that have been given.   The Options -     1) OUCH could continue as in the past.  (But then - who would be willing to be attacked at every effort.  And is that just stalling the inevitable?)     2) OUCH could try to reorganize.  (But who has the background and willingness to do it, what would be the changes and who would support the changes.)     3) OUCH could shut down.  (Anyone could organize ‘Meet & Greets’ as that really seems to be the prime interest of most members.) (If OUCH folds it must then turn over its funds to another legal 501(c)(3) nonprofit organization, preferably in a like field.)   We wish all OUCH Members could participate.  It is a very important subject; the conversation will undoubtedly have many twists and turns and thus, will require face-to-face sharing.  We respectfully ask that this be an in-person at Convention discussion.  We are planning on this being moderated to enable an orderly and a semi-formal meeting.  We must agree on the outcome for OUCH by convention’s end.

I'm sorry.  I have submitted my desire to volunteer, filling out the forms and all information three times over the last several years and have not had the courtesy of a simple reply from Ouch.    I have donated t-shirts, cash to Ouch.  At one convention, I found I could not attend at the last minute and donated my registration to Ouch so someone else could use it.

I, too, can no longer log in to Ouch.  YET -

In the last two years, I have been asked twice to run for a BOD office.  I really gave it thought, but decided not to run, mainly because since the general membership cannot access regular information, only info that the BOD cares to share, I felt I might be getting into something I was not able to handle, given my personal job/financial/ personal circumstances.  So I politely had to decline.

I cannot attend St. Louis this year - every weekend in July is booked solid with frivolous things like my granddaughter's first birthday, my best friend's wedding where I am matron of honor, the wedding of our neighbor's son who have been friends for 25 years., and of course, this weekend, Independence Day.  And, most importantly - I flat out cannot afford it.

All OUCH members SHOULD be allowed to participate in this meeting - someone figure out how to do it live time via internet.  We've all been members, we've paid our dues, we participate when we can, we donate.  We have no voice.

And DJ, please accept my apologies.


SandyC

seaworthy wrote on Jul 3^rd, 2009 at 5:41pm:

Quote: Back ground – OUCH has been unable to progress since its inception, and it becomes more difficult each year. You've got to be kidding me? Unable to progress since inception? If my history is correct OUCH started in a garage. Wasn't last years speaker Prof. Goadsby? Unable to progress? [quote]O.U.C.H. Website Ranked #1 Cluster Headache Website A study published Nov 13, 2007 in  "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors.  While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.

[/quote]


My thoughts exactly.

Sandy, I know where you are coming from, been down both roads (volunteering and never being contacted or, as in one case, turned down).

Borrowing a quote from the 2008 convention report, submitted by Mike Day, OUCH president, "The official convention activities were closed out with a reminder of the words of Professor Goadsby, “If you guys don’t get involved, nothing’s going to happen. It’s just not going to happen.”
".

Taken from the July 2008 edition of the OUCH newsletter, "I woukld like to thank our sponsor, The Linde Group, known here in the US as LifeGas......Not only have they provided funding for this past convention, but are working to help clusterheadache sufferers by sponsoring one of the most comprehensive online surveys every put together.  Their organization is also working with cluster headache sufferers to develop oxygen delivery equipment better suited to our needs."

Now, I don't know about anybody else, but it seems that OUCH, and it's supporters have accomplished some pretty amazing things.

Many of you have pointed to short comings, and there have been many.  Many of you have pointed to the successes that have occurred and there have been some.  I will not try to provide explanations or excuses for short comings or try to clarify or validate the background presented in the notice.  

This meeting is the legal and official Annual Meeting of OUCH, INC.  Like General Motors, or AAA, or any other corporation, an annual meeting is held and those members/stockholders that can attend – do, and those that can’t attend – don’t.  We are open to providing a ‘broadcast’ of sorts via the internet for all members to see – but real time to take questions and comments will most likely stagnate the meeting and block progress and we may not have enough time to allow two way communications.  I do not have the technology to make this happen.  So if someone that is attending has the technology – contact me and we will work it out – IF IT IS POSSIBLE.

There is a need to come to a ‘conclusion’ by the end of the convention as to the outcome and future of OUCH.  THAT ‘CONCLUSION’ MIGHT BE TO OPEN AN ‘OPEN MESSAGE THREAD’ on the OUCH website FOR THE SPECIFIC PURPOSE OF CONTINUING THE DISCUSSION OF THE FUTURE OF OUCH.  It doesn’t have to be – ‘Close OUCH’ or ‘Start over’ or …

Many of you have been involved with OUCH at different times.  Some of you saw the good, some saw the other.  But during the past few years there has been no real direction, no goals.  As such, things happened; O2; Dr Goadsby attended the convention last year and other projects have occurred, yes.  But these have for the most part occurred in spite of us without real direction or goals.  

Let’s have a great convention that ends with a new vitality for OUCH.  Isn’t it time to move on and start working on the future?  Who will get involved and stay involved?

Jim Welch
Treasurer
Convention Chair
Board of Directors
convention@ouch-us.org
treasurer@ouch-us.org

Please,  everyone respect DJ's constant reproach to everyone that he would prefer to keep this off ch.com.   ch.com is NOT ouch.


Jim has given you all his e-mail addy if anyone needs or wants to give up their technology in helping others to see what is going on at the convention to discuss this via a live stream, etc.  All are welcome to e-mail him with that.

Linda

Quote:

This meeting is the legal and official Annual Meeting of OUCH, INC.  Like General Motors, or AAA, or any other corporation

Except its not General Motors or AAA. Its an all volunteer organization made up of a bunch of headache sufferers and nothing more.

Get back to the roots , get off the high horse, shitcan all the lawyers that got involved, and focus on the mission statement.

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Linda_Howell wrote on Jul 3^rd, 2009 at 9:43pm:

Please,  everyone respect DJ's constant reproach to everyone that he would prefer to keep this off ch.com.   ch.com is NOT ouch. (.......) Linda

Linda, with all due respect, unless I have missed some thing along the way, I can’t recall DJ or Stephanie mentioning that we should avoid / refrain from discussing OUCH on CH.com, but as I say I might be wrong.......

To the point..... unless OUCH can provide us members, with a proper venue to discuss OUCH matters, the way I think under these circumstances, would be very welcome and good!
CH.com is my first choice as a communication alternative.....
I do use other alternatives..... but these are not public....

As I understand CH.com, and do correct me if I am wrong, is a (virtual) meeting place
where we all can discuss, from Cluster Headache Help and Support to Daily Chat.

OUCH is very important (for me)! and I believe for many....... I don’t see what is the
problem with us discussing OUCH on CH.com..... and I do grasp and differentiate
between CH.com and OUCH........

I can see that a discussion on ch.com could be very uncomfortable, and most likely annoying for some officials in OUCH...... and I understand it.....
but as uncomfortable as it is, a discussion is a welcome thing.... and most likely productive, it might even fruit some good ideas..... how and what to do with OUCH!

And as Cat (catlind) posted not all of us can attend the convention...... for what ever reasons...

l find it necessary and right to express my thoughts and engage in a discussion about OUCH!
Providing the discussion is carried out in a proper manner..... and with respect....... and without ego loaded personal anecdotes.....

Further..... I do not find e-mailing a proper way for discussion, and with all my respect to Jim Welch, I do feel I would like to know how the members feel about OUCH and the future of OUCH, and that can be done only on a public opened board, and not through filtered venue…. such as e-mail……

I do thank Chuck for bringing this up on the Boards….. It is a very important issue and
needs a very open and constrictive discussion…. for the good of OUCH!

Michael

Yes, he has Michael.  The latest being back in Nov. 08


Quote:

Quote: This is an OUCH business matter and it needs to be taken to the OUCH webiste. It doesn't have anything to do with ch.com and I'm tired of reading about it. DJ

That said,  DJ has just  informed  me that as long as it remains respectful, he will allow this discussion/venting to continue here this time.

Linda_Howell wrote on Jul 5^th, 2009 at 10:02am:

That said,  DJ has just  informed  me that as long as it remains respectful, he will allow this discussion/venting to continue here this time.

As you post linda, the key is, not only for OUCH matters.....
but for any post and thread......

WITH RESPECT…….

Michael

Thank you Deej.

OUCH has a management issue. Attempted to grow to large for its own boots.

From my perspective the minute OUCH starting envisioning itself  a corporation such as General Motors or AAA was the minute of it's decline and ineffectiveness. OUCH hopefully has discovered that to develop and sustain that level of incorporation is unmanagable by a group of volunteers.

How many ineffective committees is OUCH attempting to manage? I dont know because like so many others I cant access the website. I would reccomend that if a committee hasn't accomplished anything in the last year then simply dismantle it. Be done with it. Focus on other areas. (Like fixing the website and responding to member requests ??)
Focua on the basics.

In the past many people stepped up to assume a title and then did nothing to support the organizations afforts. Ask them to step up or step down. Remove them if need be.

There seems to be a lot of cooks in the kitchen with grand ideas but the kitchen is stagnate because no one has anything cooking.

I suggest the next convention be held in a garage with 2-3 days of reflecting on what OUCH was intended to be. I'm pretty sure it wasn't intended to be comparable to General Motors.

Downsizing is not always a bad thing. Just heard an interesting comment regarding Sarah Pahlin. "If she wants to be President she needs to be less Northern Exposure and more C-Span".

Ouch needs to be less C-span and more "Northern Exposure"

(Modifyied due to dyslexic fingers causing spelling errors)

To correct a flawed time line.....  


seaworthy wrote on Jul 5^th, 2009 at 1:01pm:

From my perspective the minute OUCH starting envisioning itself  a corporation such as General Motors or AAA was the minute of it's decline and ineffectiveness.

The events you mention below were done AFTER the org was brought in to compliance legally, not modeled after a large corporation. Part of the legal requirements is to have an annual meeting. After that, the comparisons to a bankrupt automaker are flawed.




seaworthy wrote on Jul 3^rd, 2009 at 5:41pm:

You've got to be kidding me? Unable to progress since inception? If my history is correct OUCH started in a garage. Wasn't last years speaker Prof. Goadsby? Unable to progress? Quote: O.U.C.H. Website Ranked #1 Cluster Headache Website A study published Nov 13, 2007 in  "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors.  While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.

Quote:

Ouch needs to be less C-span and more "Northern Exposure"

Even the fictional residents of Cicely, Alaska knew when to bring in an outsider to benefit the town. Then again, after watching every episode I didn't see a large healthcare concern show up offering to partner with the town to assist in the care of it's citizens.

I might suggest that any OUCH members read the by-laws of OUCH to get a better understanding of the *workings* of said group.

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Quote:

The events you mention below were done AFTER the org was brought in to compliance legally, not modeled after a large corporation.

I didn't mention any specific events. I was refering to vision.


Quote:

After that, the comparisons to a bankrupt automaker are flawed.

The original referance to a large corporation was made by an OUCH board member. Not me.

Personally I think the best use of this thread will be to discover a means of allowing as many members as possible access to the discussions at the convention meetings regarding OUCH's future;  Little in the way off effective good comes from comparisons, declarations of failures, and/or deeming any present or past OUCH volunteer as having done a good/bad job.

What has happened in the past is in the past;  I'm fairly sure that every single person who has ever volunteered with OUCH has someone out there who can find flaws, faults and failures of each one, myself included; the past can't be changed, but it can be learned from.  What is needed is constructive effective discussion on how to allow participation of the greatest numbers of members in the upcoming discussions for OUCH and it's future.  

Involvement of the membership is needed;  ideas for the best interest of the organization and the members who benefit from their work is needed;  I do not have the ability to broadcast the meetings as I won't be in attendance.  If there is anyone who will be attending the meetings, or who can provide the technology for the meetings to be attended virtually, now is the time to please step forward and volunteer.

We all know it can be done, a great number of us attended DJ and Stephanie's wedding through the technology of virtual viewing.  We just need someone to be able to provide that same technology for the OUCH meetings.

Cat

Hear, hear. :).


catlind wrote on Jul 5^th, 2009 at 5:40pm:

Personally I think the best use of this thread will be to discover a means of allowing as many members as possible access to the discussions at the convention meetings regarding OUCH's future;  Little in the way off effective good comes from comparisons, declarations of failures, and/or deeming any present or past OUCH volunteer as having done a good/bad job. What has happened in the past is in the past;  I'm fairly sure that every single person who has ever volunteered with OUCH has someone out there who can find flaws, faults and failures of each one, myself included; the past can't be changed, but it can be learned from.  What is needed is constructive effective discussion on how to allow participation of the greatest numbers of members in the upcoming discussions for OUCH and it's future.   Involvement of the membership is needed;  ideas for the best interest of the organization and the members who benefit from their work is needed;  I do not have the ability to broadcast the meetings as I won't be in attendance.  If there is anyone who will be attending the meetings, or who can provide the technology for the meetings to be attended virtually, now is the time to please step forward and volunteer. We all know it can be done, a great number of us attended DJ and Stephanie's wedding through the technology of virtual viewing.  We just need someone to be able to provide that same technology for the OUCH meetings. Cat

It has to be two-way communication, not just people who are not in attendance viewing the goings-on.

Establishing some kind of chat room, to be operated during the member meeting sessions, is the idea. I'm not sure, however, how successful the group in St. Louis would be in being able to stick to the agenda with the potential for hundreds of remote members wanting to be heard. Plus, an online chat room can only display so many responses before it scrolls past things that haven't yet been addressed.

Just some things to think about.

to attempt to add to the debate, the enforced ''slow downs'' could be used as breathing space, a ''resolve'' could take a while. Andrew.

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Webinar is good and my company has used it.  It still doesn't address the issue of those not in attendance being able to view and hear the board meeting, not unless we use Skype to broadcast (which would also provide another venue for participation by members).

What will be needed in either event is one person or perhaps two or more, depending on how many people want to attend via the internet, will have to act as their *voices*.

I'm going to e-mail a friend of mine who is a *wizard* at these types of things.  He's an expert with electronics.

I've consulted with DJ, and he has graciously offered to allow OUCH to utilize the clusterheadaches.com chat room as an alternate or backup option during the meeting in St. Louis. He figured that most members will be using Skype, like normal.

He is also looking into some options for OUCH to do some streaming via this website as well.

Thanks, Deej.

I haven't tried it out, but here is another webinar option:

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DJ

And another one...

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Jim, can you ensure OUCH knows of these options for LouCon?

Deej

I think the best idea for individuals at this point would be to find an attendee who they can  contact directly for ideas/questions.  That way it would not be 1 persons job to try and convey the thoughts of an entire group.  Then, we could use a webinar for them to see and hear the conference, but they could have 1 person who they could trust to try and help get their ideas/thoughts out.  However, that will be tough.

I will be there and my vote is going to be to make the final decision on this topic via online vote so that the final decision would be made by membership.  I also will suggest that vote be postponed until all open requests for access to the site/vote are reconciled.

Finally, I wonder if members could give proxy rights to an attending member to vote for them.

Anyway, those are my thoughts.

Actually, I disagree with the idea of non-attendees contacting attendees (i.e., the buddy system). Attendees are shelling out $$ to be there so that they can participate, socialize, learn, etc. For that low, low price, we're supposed to be using non-meeting time to keep others up to date in close to real time and soliciting their ideas? No way. We should provide, to the best of our ability, a way for non-attendees to get as much info as possible (without putting undue burden on the people that are there), and leave it at that.

Brew wrote on Jul 5^th, 2009 at 10:24pm:

Actually, I disagree with the idea of non-attendees contacting attendees (i.e., the buddy system). Attendees are shelling out $$ to be there so that they can participate, socialize, learn, etc. For that low, low price, we're supposed to be using non-meeting time to keep others up to date in close to real time and soliciting their ideas? No way. We should provide, to the best of our ability, a way for non-attendees to get as much info as possible (without putting undue burden on the people that are there), and leave it at that.

Brew, if you disagree, then don't make yourself available, period.  y suggestion is purely voluntary.

I am paying my money, but somehow I don't think that entitles me to more of a say in the direction of this group.  To me the money is going to pay for the extras I get for being there, not towards having a say to the future.

Just my opinion.

People who are there, like myself, plan all year (or sometimes longer) to be able to be there. I expect to be able to enjoy myself during non-meeting time, and I suspect many others will want to do the same.

If you want to spend your non-meeting time on the phone with members who aren't there, have at it.

ETA: Nowhere did I suggest that I should have more of a say because I'm physically there. Don't put words in my mouth, please. I fully agree with any voting happening online after the convention.

seaworthy wrote on Jul 3^rd, 2009 at 10:43pm:

[quote]This meeting is the legal and official Annual Meeting of OUCH, INC.  Like General Motors, or AAA, or any other corporation

Except its not General Motors or AAA. Its an all volunteer organization made up of a bunch of headache sufferers and nothing more.

Get back to the roots , get off the high horse, shitcan all the lawyers that got involved, and focus on the mission statement.

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Don, Jim was referring to the fact that OUCH Inc. is having their annual meeting, just like any other corporation. OUCH may not be General Motors, or any other large corporation, but a corporation it is. And being a corporation, it has legal obligations to meet.

And just as it is at other corporations annual meetings, the meeting is announced, some folks are there, some are not.

To me, saying "it's an all volunteer organization made up of a bunch of headache sufferers and nothing more" is insulting to the work that OUCH has done. Is there something wrong with the BoD volunteering their time?  OUCH could pay salaries to get some experienced people in there to run it.  

At this late date, it will be hard to accommodate all members of OUCH to attend virtually. I suggest an agenda be listed, and stuck to in the discussion.

To everyone who wants to have the members involved, just exactly what do you mean by that? I don't mean putting up a message board, so come people can talk about how they would do things, and flame the current BoD, I would like to know what you all mean by involving the members. Are you all prepared to volunteer to work for OUCH? Or to sit on the sidelines and comment?

Having streaming video so people can see is one thing. Having everyone not in attendance able to comment will stagnate the meeting, and it will get nowhere fast.



A few things I'd like to see on the agenda:

Having a 3rd party webhost, overhaul and host the website. Fix the log in problems.

Bring in a BoD that has a business background. They don't all need to suffer from CH. They need a business background. Pay them.

Keep Family Services.

Plan the annual meeting, preferably in the middle of the country, so more people can attend, and be involved in the meeting. Afford more time to discuss OUCH business.

The membership should be paying annual dues. Tax deductible.  How many members does OUCH have? Then lifetime memberships would be just that. In addition to being honored with this award, the awardee would not paying dues for the rest of their lives. Otherwise having lifetime members is kind of meaningless. If we aren't paying dues, then we are all lifetime members.


Anyone care to add to this?

FramCire wrote on Jul 5^th, 2009 at 10:08pm:

Finally, I wonder if members could give proxy rights to an attending member to vote for them.

Fram, Proxy votes are signed over to the board of directors to vote. If you are not in attendance, and proxy voting has been set up in advance, the person voting can fill out the proxy and mail it, or send it via a third party website that is set up for such purpose. If they are not filled out, then the board votes as they see fit.

When I asked to be able to “join” the discussion about OUCH, and be able to voice my
opinion I meant doing it now before the meeting! tossing ideas, tossing thoughts, in a way, a barometer to what the “mood” toward OUCH, and the priorities of the members......

During the meeting at the convention, I would love to be able to see, to listen.....but not to take an active role, the nature of meetings such as this one - it is not
a video conference - it is a members meeting, members that are present at the meeting
place, and not only I accept it, I support it.....
One can deposit a excuse letter with some points that he would like the chair to consider
during the meeting, but it is up to the chair to bring it up......

The discussion in the for front of the convention is important, it is in a way a compass
to the priorities of the members, to the commitment, to the interest in the organization
and goals.

Unfortunately I do not see much of that.....  I don’t know why, I can only speculate......
I am also (in a way) a frustrated member.... but I don’t give up..... I think OUCH is
not a corps! it might be (Seem to some of us) stagnating...... disconnected from the
members..... well I have the impression that it is our fault.... the members fault......
we ignored the instrument OUCH.....
we trusted someone else will do the job for us.....
But it doesn’t work that way....  it takes involvement..... if not direct then in direct....
but ignoring..... being apathetic dose not do!!!!
and when the situation we are facing
accurse it is mostly to late to say why didn’t we / they do any thing........

For OUCH it is not to late, it is almost midnight but not yet............
if we the members, are interested in an instrument called OUCH, we need to be
simply more involved.... on both ends.... but it is the individuals responsibility.....
to seek information, and the organizations to provide it..... at the same time
the organization needs to be more transparent...... and communicative..... and
try to do less and achieve more...... to set goals and priorities, (I do not suggest
it was not done) and communicate it to the members......

I know it is simple to suggest and not to have to take responsibility......
I know I am one that quit responsibility..... for what ever reason....  
But I still care..... I still would like to see OUCH immerge out of this with a strong
leadership..... (and we do have some very good ppl. in OUCH BoD)  and most important
membership that care and involve in the “life” of the organization.....

Michael

Quote:

Are you all prepared to volunteer to work for OUCH? Or to sit on the sidelines and comment?

Are you suggesting that if you are not active then you should not have a voice?

Members have a right to sit on the sidelines and comment and direct those comments to the BoD if they so choose by virtue of the fact they are members. There is no requirement that a member must be active to voice an opinion.

A message board of some sort could be set up prior to the meeting so that comments and ideas can be tallied and discussed during the meeting. Moderate the MB as Deej has done here and there should be no problem. Incorporate the comments and ideas into the agenda and/or add a panel discussion to address the ideas and comments virtually.

I read the Bylaws a couple of weeks ago (and I think I'm right on this) and proxy votes are not allowed - only those present and voting are counted, so I think proxies are a moot point.

But a lot of people will have laptops so members can watch and type in "suggestions" and "questions".

And anything said needs to be either a quetion or a "suggestion" not a cirticism - we know OUCH has problems - we don't need to expand on that - we need to figure out what to do to "solve" these problems.

One thing that (with volunteers) that can HELP OUCH is take a volunteer's "expertise" and use it for that PURPOSE. What I'm saying is if we have someone who's a computer whiz (like DJ - sorry Deej - you just came to mind) put that person to improving the website and making it the best it can be. If the person writes grants for a living - give him/her a shot at getting grants for OUCH.  If we've got someone who knows insurance - put them on a committee to research insurance, etc...

Right now we need an "organizer" - someone who's good at organizing - an office manager so to speak. As someone said a while back - we've got a lot of good cooks in the kitchen, but we're not getting a lot of cooking done.

But the membership needs to be informed of what's going on and they need to be involved. I really feel the more the members are informed the more they'll become involved.

Hugs BD

Brew wrote on Jul 5^th, 2009 at 10:24pm:

Actually, I disagree with the idea of non-attendees contacting attendees (i.e., the buddy system). Attendees are shelling out $$ to be there so that they can participate, socialize, learn, etc. For that low, low price, we're supposed to be using non-meeting time to keep others up to date in close to real time and soliciting their ideas? No way. We should provide, to the best of our ability, a way for non-attendees to get as much info as possible (without putting undue burden on the people that are there), and leave it at that.

I'm going to have to disagree with you here.  Yes, I've saved and shelled out the money to go to convention.  However, I also realize that some people just DO NOT have the extra funds to get there.  I'm lucky that I can drive this year (like I did last year).  If I had to fly, like numerous members would, I would not be able to afford to go.

Chris,
I can't find a particular section in the by-laws that states how proxy votes are to be handled (only that the directors cannot vote by proxy).

Barb,
I didn't find any by-law relating to proxy votes by members, only the directors.

ARTICLE 16. PROXY
16.01.00 Proxy. Directors shall not be permitted to vote in elections by proxy.


BarbaraD wrote on Jul 6^th, 2009 at 8:14am:

And anything said needs to be either a quetion or a "suggestion" not a cirticism - we know OUCH has problems - we don't need to expand on that - we need to figure out what to do to "solve" these problems.

Those *problems* need to be brought to the forefront and possible solutions discussed.  Cannot solve a problem until the problem itself is recognized.

This discussion is a good start.  The biggest problem I see here, is that there is still only a very small group in the discussion.  There has to be mor members out there that aren't expressing their opinions/ideas.  And that, is the biggest problem any organization faces. People tend to want to see change, but they don't want to be the venue for said change.

For starters, I agree with Chris that membership needs to be *paid* as opposed to *free*.  It doesn't have to be that much and those with families could have a family membership.

Any major changes discussed and voted on by the directors needs to be presented to members and voted on by the members at large (given that membership is all over the world, it could be done via a poll on the OUCH website).

Other people have suggestions?

Carolyn, if you're comfortable being somebody else's eyes, ears, and mouth for the run of the convention, then bless your heart. If everyone there did that, however, the meeting would 1) be way out of order, and 2) become one huge clusterf*ck.

The more I think about this, the more I am of the opinion that the BoD and those members present make an honest effort to:

a) either transcribe or webcast what happens at the meeting

b) provide an avenue for remote members to comment or question (i.e., a chat forum), and

c) save any important votes for an online forum, much like has been done in the past for BoD elections.

If anybody wants to buddy up with somebody to provide briefings, there's nothing wrong with that. But that activity should not be allowed from within the meeting room while in session as it would prove to be extremely disruptive.

Brew wrote on Jul 5^th, 2009 at 10:24pm:

Attendees are shelling out $$ to be there so that they can participate

Sorry man, but that part of your post sounded like those that didn't pay didn't have as much of a right to participate.  I now know that is not what you meant but hopefully you now can see I was not trying to put words in your mouth.  

Next time please don't use the "words in my mouth" line with me.  You should know by now that I don't purposefully do that.  Just clarify what you were saying and move forward.  Just a friendly request.

I always felt that there are so many voices yet it always appears that the majority only come out to protest or bitch when something happens.

I do not know how many are truly supporters other than those who are active in BOD and others with defined postions.

I do know that I have been asked to run or to hold certain positions and I have been unable to do so over the 5 yrs that I am a member. I will not take on anything that I cannot give 110%

That being said, I have always said that dues even if a minute amount are necessary for an organization to run. It also ensures some level of accountability for those who actually want to have input regardless of what it may be. It does make people feel as if they are a part of something.

Dues can be as little as $1.00 and those who do pay have the voice. If dues are not paid, then one cannot voice, vote nor participate in certain events.

There has to be some level of accountability for the members not just the BOD.

Members also have to take into consideration that these are volunteer positions and many may have the heart but (no disrespect) not the skill sets. So appreciation should be given to the individuals and also the situations that they may be involved in.

There's my opinion. I guess I compare it to those who discuss politics yet do not pay taxes nor vote. If you are not accountable or take the opportunity to make change then you really should keep your mouth shut.

This was not directed at anyone. It is directed at the spinning circle that seems still be occurring.

Some great things have happened.
The question is, how can it be brought to the next level and that remains everyone's issue.

Ex2

Brew wrote on Jul 6^th, 2009 at 9:40am:

If anybody wants to buddy up with somebody to provide briefings, there's nothing wrong with that. But that activity should not be allowed from within the meeting room while in session as it would prove to be extremely disruptive.

Im not sure how IM or text messaging disrupts the meeting.  I agree it would be poor form to make phone calls because of the audio distraction, but I often text/IM in class/church and very few people know.  If I am not IM/text, I usually take notes on my phone, so there is really no way that this practice would be any more/less disrupting than taking notes on my phone.

If you but the meeting on webinar, then you only have to IM/text ideas and such because they dont need to be "brief"ed

FramCire wrote on Jul 6^th, 2009 at 10:05am:

Brew wrote on Jul 5th, 2009 at 10:24pm: Attendees are shelling out $$ to be there so that they can participate Sorry man, but that part of your post sounded like those that didn't pay didn't have as much of a right to participate.  I now know that is not what you meant but hopefully you now can see I was not trying to put words in your mouth.   Next time please don't use the "words in my mouth" line with me.  You should know by now that I don't purposefully do that.  Just clarify what you were saying and move forward.  Just a friendly request.

Consider it done.

And I would appreciate not being lectured in return. We're all big boys and girls here.

FramCire wrote on Jul 6^th, 2009 at 10:24am:

Brew wrote on Jul 6th, 2009 at 9:40am: If anybody wants to buddy up with somebody to provide briefings, there's nothing wrong with that. But that activity should not be allowed from within the meeting room while in session as it would prove to be extremely disruptive. Im not sure how IM or text messaging disrupts the meeting.  I agree it would be poor form to make phone calls because of the audio distraction, but I often text/IM in class/church and very few people know.  If I am not IM/text, I usually take notes on my phone, so there is really no way that this practice would be any more/less disrupting than taking notes on my phone. If you but the meeting on webinar, then you only have to IM/text ideas and such because they dont need to be "brief"ed

I am obviously not the one to be throwing suggestions out here. I'm going to defer to the expertise of others to come up with a way we can all contribute, no matter where we are during this meeting.

Brew wrote on Jul 6^th, 2009 at 10:25am:

FramCire wrote on Jul 6th, 2009 at 10:05am: Brew wrote on Jul 5th, 2009 at 10:24pm: Attendees are shelling out $$ to be there so that they can participate Sorry man, but that part of your post sounded like those that didn't pay didn't have as much of a right to participate.  I now know that is not what you meant but hopefully you now can see I was not trying to put words in your mouth.   Next time please don't use the "words in my mouth" line with me.  You should know by now that I don't purposefully do that.  Just clarify what you were saying and move forward.  Just a friendly request. Consider it done. And I would appreciate not being lectured in return. We're all big boys and girls here.

This isnt a lecture, my friend.  It was just a simple request.  There was no intention of lecturing or talking down at you.  I said I was sorry, so I am not sure how you took that as a lecture.

Fram and Bill....................I'm going to put both of you in time out if you don't chill. :P

I don't think you two have met. You are going to really like each other when you meet. Trust me on this. You two are both alike and both good guys.   :D

I am sorry, but I still miss “strategic” thinking.....
I miss goals..... technicalities and procedures
are set according to, and upon strategy and goals,

I believe the BoD is ewer of the interest of some, or all to be
able to take "part" (long distence) in the meeting, in what ever constellation......

from my point of view – “see” if technically and procedurally possible
and “listen”.... if technically and procedurally possible.......
And this is for the BoD to decide..... and Ill go with it, if I like it or not
it is the responsibility, burden and right the BoD carry.....

but we need to focus at the moment, not much time left..... to look
what do we as members would like to see in OUCH... what should
OUCH strategically concentrate on..... what roll should it play in the
short and long term.....

once we have formatted some Ideas, we can start and look how we
get to them. and from there the BoD is to take the “Ship” and navigate....
and communicate..... success or failure...... ways... in other words inform
let us members be part of the process.....


I know it is for the BoD to provide the above “strategic” goals..... and for
us members to agree or not.....  but for the moment I just cant see it
happened..... not for lack of knowledge or dedication...... it is just that
the “Ship” is in a drift with out a set curse.....

I also miss some what an more active involvement from the BoD in this discussion, and the
officers..... if not now then when.....  this is not the moment for procedures
and collegiality.... or what ever....

It is about something that, as it seems is important to so many of us.....


Michael

Jimi wrote on Jul 6^th, 2009 at 10:43am:

Fram and Bill....................I'm going to put both of you in time out if you don't chill. :P I don't think you two have met. You are going to really like each other when you meet. Trust me on this. You two are both alike and both good guys.   :D

That's why I said I was done, Jimi.

Jimi wrote on Jul 6^th, 2009 at 10:43am:

Fram and Bill....................I'm going to put both of you in time out if you don't chill. :P I don't think you two have met. You are going to really like each other when you meet. Trust me on this. You two are both alike and both good guys.   :D

I love time out.  i got 3 kids and the idea of sitting in a quiet chair is soooooo nice.

I KNOW THERE ARE PEOPLE OUT THERE WITH THEIR FINGERS TWITCHING RIGHT NOW! I know plenty of people who have worked very hard to see OUCH become what it should be! I know, for a variety of reasons, a lot of what OUCH has accomplished has fallen on deaf ears.
When a large group of people band together for a cause, there are bound to be differing opinions as well as different levels of education. intelligence, ability and involvement.  
This is not the time, necessarily, to thank them, but we need to acknowledge the fact that OUCH HAS  been an effective entity, and even as  we speak, people are quietly going forward with more efffort on your behalf.

How one resolves the issues at hand? I'm not certain. I DO know, some of the movers and shakers in OUCH have been pretty much silent to the larger mass, simply keeping their heads down, working.

There is an old saying "lead, follow, or get out of the way">>>>>>>>well, never has it been so true. Each year, once Conv is done, people jump on the badwagon which is OUCH, extolls the group's virtues as lined out in the Gen Meeting,  it all trickles down to those who didn't attend, some grrumblings begin, and, for all of their efforts, there begins a public tar-and-feathering!

Before you flush this very worthy organization, go back thru the old msg board. Read what people........ I'm not naming anyone here, for fear of forgetting someone.........the GREAT here, FAR outweighs the negative.........BY FAR!
I'm also not going to try to tell you nothing negative has ever occurred......but 'chit happens".....different people, different circumstances and past history from which we can learn.

I'm hoping OUCH can regroup, once again, focus on the successes of the past, find a positive, enlightened BOD, and become the leaders OUCH needs to send the  CH message to the world, because that is the MOST important part.......there NEEDS to be some cure/control found for CH..........

When you think about what should-or should not happen, keep your eye on the prize.

What began in a garage can continue in a garage. What talent one has, be it professional or passion for a cause- it is ALL of value.

Just thoughts, gang, and kudos to those now and in the past, who have dedicated themselves, in whatever capacity.
Cathi

Here are some suggestions/proposals:

- The whole discussion session recorded and made available to the membership after the convention.

- A list of viable suggestions as to what needs to be done.

- A section of the O.U.C.H. board set up, visible to sufferers and supporters only (not the general public) where open discussions can be held, BOTH ways, WITH moderators.

- After a month or two, the membership VOTES on the proposals.

- O.U.C.H. then goes ahead and follows the will of the membership, even if the vote is to disband (I hope not!).




One of the proposals that I think O.U.C.H. should take is to whittle down the committees, and only focus on one or two projects per year.  I think the organization has been spread too thin, trying to do too much.

Just suggestions.

Chuck

What do clusterheads want most?

A cure!

How do you find a cure?

Research!

I think that should be the main goal of OUCH, support and participate in research.  At the Atlanta convention, John from OUCH-UK spoke of our numbers being our biggest asset.  The more members OUCH has, the bigger the database to draw from.  That is why OUCH has no membership dues, so it can sign up as many suffers as possible.  That is why the old web site started surveys.  To collect info from those many members.  If you look at DJ's survey on this site, there are umpteen thousand response.  Pretty reliable info.  More specific surveys provide reliable info on treatments, demographics, etc.

Talk with the researcers to find out what we can do.  Limit OUCH's efforts to that.

I'd like to see OUCH continue (shut up Don) ;)

If I started quoting everybody I wanted to, I'd have too many windows open  ;).

Eric,
I agree, set a fee and then let the members who have paid memberships have voting rights.

Chuck,
That's not a bad idea.  I don't think it would be mandatory to determine everything at this meeting.  However, discussion needs to begin somewhere.

Also, as far as the discussion area, pattern the rules after what DJ set up for the board.

BobP
A cure would be wonderful, but in the meantime, getting the message out to everybody would be second to a cure?

Quote:

I always felt that there are so many voices yet it always appears that the majority only come out to protest or bitch when something happens.

As Don said....Bingo.  !!!!!!


Chris (purpley dog)   yes, that is exactly what Jim was trying to convey before it got twisted regarding corporations such as AAA and others.  

Quote:

(shut up Don)

Its been so long!!!!  (sniffle)

I would also suggest that a certain someone return the OUCH yacht that went missing long ago. Theres no place in OUCH for pirates and privateers.

seaworthy wrote on Jul 6^th, 2009 at 9:01pm:

Quote: (shut up Don) Its been so long!!!!  (sniffle) I would also suggest that a certain someone return the OUCH yacht that went missing long ago. Theres no place in OUCH for pirates and privateers.

But I was told YOU have it. That's where I thought you have been this whole time.

Quote:

But I was told YOU have it.

Pirates lie.

Quote:

And another one... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Jim, can you ensure OUCH knows of these options for LouCon? Deej

My knowing about these sites, or the Board of Directors (BoD) knowing, is of little value.  As I stated before I do not have the technology nor will I have the availability to handle the broadcast.  I don’t believe that any of the BoD attending will have the technology either.  I have ask that an attendee with the expertise to make it happen – volunteer by contacting me.  No one yet.  Here is my personal email – jlw-44@live.com .  Without someone to make it happen it will be hit and miss AT BEST by whatever attendees do individually.

The ideas and suggestion for delaying any vote until after the convention and providing an input message board on OUCH has some merit.  BUT – a word of caution – in the past discussion has often been substituted for making something happen.  (As in – IF we keep talking and changing the subject we won’t have to accomplish anything because we are too busy and we can complain that nothing is getting done.)

I wish to thank those of you that have been participating in this discussion.  I stated in my earlier post that errors and omissions have been made and there is plenty of adjustment needed.  It is now the task of you OUCH members to look forward.  If you want an OUCH that has limited tasks, such as only: ‘An informational based website’ or ‘A pool of members for surveys and test trials’ that will not take much of a structure or BoD to manage.  If you wish it to do more then the leadership (BoD) must have the expertise to fulfill the mandate.  

As a nonprofit corporation ‘all BoD members must be unpaid volunteers’.  It is the law.  The volunteers that serve on the BoD do not have to be CH sufferers or supporters.  But they (should be/must be) members of the organization; AND (as stated by every nonprofit consulting, educating or monitoring body) should be financial contributors to the organization each year.  It makes them have a vested interest in what the organization does with their dollars and everyone else’s.  They should also have an interest in the organization and a strong desire to make things happen.  

I would hope that one of the outcomes at this convention is the identification and possible recruitment of talented individuals to serve on the BoD or one of the projects or committees THAT ARE DEMEED TO BE RELEVANT.  

Jim Welch

I am currently working on getting more information on ustream.tv.  I have two friends, both of whom have used this and are willing to help me with the set-up.  The one I really need to talk to is on vacation in Austria, so when I can talk to him, will let everyone know more.

Quote:

The one I really need to talk to is on vacation in Austria, so when I can talk to him, will let everyone know more.

Ja, bitte. ;D

From original message:


Quote:

To be discussed:   Should OUCH continue to operate? OR.. How should OUCH continue to operate?

I am for continued operation in a survival mode.



Quote:

The Options -    1) OUCH could continue as in the past.      2) OUCH could try to reorganize.      3) OUCH could shut down.

Reorganize similar to this fashion, for now.


jwelch wrote on Jul 6^th, 2009 at 9:55pm:

If you want an OUCH that has limited tasks, such as only: ‘An informational based website’ or ‘A pool of members for surveys and test trials’ that will not take much of a structure or BoD to manage.

That is an accomplishment and should be retained.  I wouldn't consider option 3, shutdown.

In Autumn the National Geographic presentation will be shown.  This has been one goal all along.  Opportunity could knock and someone should be there to answer.  An idea, insight, or direction may rekindle interest if we keep the embers glowing.  In any event, it would be nice if a letter of thank you came from OUCH, even with many members being able to include their name.  An inspiring thanks also to the research facilities and persons for continuing their work, positive feedback with a very interested hand.

Agreeably, if we don't, who will.


Bob P wrote on Jul 6^th, 2009 at 1:20pm:

Research! I think that should be the main goal of OUCH, support and participate in research.   Talk with the researcers to find out what we can do.  Limit OUCH's efforts to that. I'd like to see OUCH continue

If plying option 1, these items should be laid on the table first:


Quote:

There have been lots of proposals, suggestions, ideas and starts...

With these items being made known to all, it may be that someone's interest could be instilled to pick up the ball on one of them.  Any new and other items submitted at convention discussion or at any time.


jwelch wrote on Jul 6^th, 2009 at 9:55pm:

They should also have an interest in the organization and a strong desire to make things happen.

I'd believe there is interest and desire, but at this time a focus perhaps less unified to be absorbing.  Bob P seems to allude similar and Michael (wildhaus) mentioned.




Hey again, Don!   8-)