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

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


Not just you Cathy...

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.

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....

Quote:


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.

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.

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...

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

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

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

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