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New CH.com Forum › Daily Chat › General Posts › RIP O.U.C.H.

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RIP O.U.C.H. (Read 7919 times)

Batch

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RIP O.U.C.H.
Apr 7^th, 2012 at 4:10pm

It's sad to see this happen to a great organization... OUCH has done so much for all of us one way or another... and that is comforting... Well Done!

I suspect we'll still have opportunities to gather... This thing called cluster headache isn't going away and it's so good for CH'ers to meet others who also do battle with the beast..

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: RIP O.U.C.H. Reply #1 - Apr 7^th, 2012 at 4:14pm What??? Ouch is no more? I must have missed a lot. What the heck happened? Sad to see a much needed organization go.
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: RIP O.U.C.H. Reply #2 - Apr 7^th, 2012 at 4:22pm Lack of interest happened it appears.
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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: RIP O.U.C.H. Reply #3 - Apr 7^th, 2012 at 4:26pm This SUCKS!! I was interested but my work and mandatory OT hours (10 hour days) prevented me from helping. Hopefully it can/will be resurrected!
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QnHeartMM

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Re: RIP O.U.C.H.
Reply #4 - Apr 7^th, 2012 at 8:02pm

OUCH as an organization may be going away, but we are all party of of a community to deal with and support CH. We can do that here, and at cb.com.

For the actual OUCH announcement, please go to ouch.clusterheadaches.com.

Thank you to the Boards of Directors who have carried the organization through the years, and all the various volunteers.

Treat people with kind words.

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Simon CH.com Veteran Offline Posts: 127 Hunstanton, Norfolk, UK Gender:	Re: RIP O.U.C.H. Reply #5 - Apr 7^th, 2012 at 8:08pm Saw a message on facebook that OUCH was going the way of all flesh. Can't believe that with as many sufferers as there are in the States that no-one could be found to run it. A tragedy. All the best to my old friends dolly
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: RIP O.U.C.H. Reply #6 - Apr 7^th, 2012 at 8:18pm Quote: Can't believe that with as many sufferers as there are in the States that no-one could be found to run it. I'm sure you didn't mean for that to sound like such an insult to the good folks who have kept it afloat for as long as they have.
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: RIP O.U.C.H. Reply #7 - Apr 7^th, 2012 at 8:19pm Sorry to hear about this. My sincere thanks to all who served the organization over the years. All the best, George
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Simon

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Re: RIP O.U.C.H.
Reply #8 - Apr 7^th, 2012 at 8:32pm

Not at all, Brew. I remember well when I was on the OUCH Board when it first started that the geographical size of the US always made meetings problematical - so much so that they even had a Brit like me helping out! That problem we fortunately never had in the UK, when meetings are much more easily attended. I watched the video of Peter Goadsby talking to the OUCH conference recently and was genuinely shocked how few people there were there. Not an insult, merely an observation.

I'm well aware that in cycle people can be unable to help, and when out of cycle they often prefer to forget things while they can! Americans generally have less holiday allowance, and I suspect are less willing to use it for conferences etc., especially if they've used it for recovering from episodes. As for myself I was very involved for two or three years, then the energy ran out, so there's no way I would/could criticise for that.

It was a lament, not an accusation!

Simon/dolly

« Last Edit: Apr 7^th, 2012 at 8:33pm by Simon »

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Callico

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Re: RIP O.U.C.H.
Reply #9 - Apr 7^th, 2012 at 8:38pm

No insult was taken, at least by me. We hate to have to come to this place, but we had no one step up to help. We have had people say they want to volunteer, but then don't answer emails. We had to change the by-laws because we had board members who had to resign for varied reasons and we could find no one to replace them. I understand finances are tough right now, but we couldn't get enough attendance at Convention to cover the cost. Unfortunately, OUCH has come to the end of its usefulness. OUCH has served CH well over the years when there was no other source of information out there, but as other sources have cropped up and as people have become more educated about CH perhaps the need for it is past. I know I am sorry to see it go, but we could not continue to keep it going without ongoing support.

Speaking for myself, I hope you will continue to support and be behind CH.com and CB.com. Both websites are doing a great job of taking care of newbies as they come looking for help. I'm particularly happy about the progress being made in some of the research that has come about because of Clusterbusters and look forward to the day we will have BOL available.

Meanwhile, although OUCH will be closing it's (virtual) doors, make every effort to meet other clusterheads and support those who are doing the work of running the message boards.

To those of you who have been a part of OUCH, particularly those of you who have served on the board or on various committees when they were functioning, I thank you very much. Some of you have donated or have done "In Kind" donations. Thank you. OUCH may be closing, but the needs are still there. It is important then that we as clusterheads do what we can to reach out to others in need.

Some of the OUCH website will be kept going in one form or another. The Drs list that Bill Mingus has done such great work on will continue. Keep an eye out for announcements as we determine what is the best disposition for them. I cannot over-emphasis what Pat and Christy have done in revamping and keeping the OUCH website going. They deserve a big Thank You from all of us.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Jimi

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Re: RIP O.U.C.H.
Reply #10 - Apr 7^th, 2012 at 9:00pm

Well said Jerry.
Hi Simon

.

Years ago when DJ started ch.com and people met others with this malady for the very first time, there was nothing else out there other than a few books and medical papers.

OUCH was formed by members that met each other here from all over the world. And they began to get the word out to many medical organizations and physicians throughout the world. OUCH began to pop up in other countries as well and through that, clusterheadaches are much better understood worldwide and in the medical community.

Today if you were to type in clusterheadaches there are a myriad of websites with great information. I know of at least 4 on Facebook as well. Throughout my life I have discovered that everything runs it's course and it appears OUCH US has as well.

Like Simon said, OUCH in the US has always been difficult due to vast size of the country as far as getting things accomplished beyond what is done on most sites. The info is still on the web for those seeking, and the research that we so wanted to try to get going is being done admirably at clusterbusters.

It is sad when one door closes but there are usually new ones that open and sometimes even improves on what the grassroots started.

I applaud all those who were involved in any way. Smiley

I am convinced that life is 10% what happens to me and 90% how I react to it.

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The Mad Viking CH.com Sponsor Offline Always Look on The Bright Side of Life Posts: 3583 Oslo, Norway Gender:	Re: RIP O.U.C.H. Reply #11 - Apr 8^th, 2012 at 4:08am My heart cry reading about this.OUCH and the convention and meeting my clusterfamily was a very importent thing in my life.Thanks to everyone that has contributed so far. Svenn & Bente
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sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: RIP O.U.C.H. Reply #12 - Apr 8^th, 2012 at 4:17am My humble thank yous to each and every member and volunteer who have kept Ouch going over the years. Thank you so much! Attending the convention has been a part of our plan, and its sad to know that now we cannot make that happen. I just have to bug many of you individually instead. Sanna
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pattik

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Re: RIP O.U.C.H.
Reply #13 - Apr 8^th, 2012 at 10:08am

RIP OUCH. Like in any memorial worth it's salt, the humor and camaraderie should not be forgotten. As a former newsletter contributor, I can attest to the intelligence and sense of humor that can be found in abundance amongst CH'ers. I don't know how long the OUCH site's archives will be available, but if you're wandering through the site, check out the April Fool's newsletter from April '07: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: RIP O.U.C.H. Reply #14 - Apr 8^th, 2012 at 10:19am I want to personally thank all who have contributed their time and efforts and resources to OUCH over the years. So "Thank you". I feel a great loss and am deeply sad about this. Bless you all for carrying the torch.
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: RIP O.U.C.H. Reply #15 - Apr 8^th, 2012 at 1:16pm Patti, that issue was hilarious. I had forgotten about it.
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pattik CH.com Alumnus Offline Posts: 2631 Wisconsin, USA Gender:	Re: RIP O.U.C.H. Reply #16 - Apr 8^th, 2012 at 1:21pm Jimi wrote on Apr 8^th, 2012 at 1:16pm: Patti, that issue was hilarious. I had forgotten about it. How's that Vibe-O-Matic unit been working out for ya?
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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: RIP O.U.C.H. Reply #17 - Apr 8^th, 2012 at 1:34pm Thanks for the reminder of the good times Patti.....
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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: RIP O.U.C.H. Reply #18 - Apr 8^th, 2012 at 5:59pm OUCH was the first serious thing of any kind that I found on line and I could never stay away. At first it was curiosity but then I had to meet all of you and attend a few conventions. I just wish I had been able to give as much as I've taken though. All of you did a great thing and thanks so much. R. I. P. Indeed. Charlie
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: RIP O.U.C.H. Reply #19 - Apr 8^th, 2012 at 7:50pm Many, many thanks to ALL clusterheads & supporters who helped to run OUCH. Your valuable service was very much appreciated!!!!! My wish and hope for all of us, is for a PF future, no matter how we get there. mel
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Lenny CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 642 Los Angeles,CA Gender:	Re: RIP O.U.C.H. Reply #20 - Apr 8^th, 2012 at 10:54pm Melissa wrote on Apr 8^th, 2012 at 7:50pm: Many, many thanks to ALL clusterheads & supporters who helped to run OUCH. Your valuable service was very much appreciated!!!!! My wish and hope for all of us, is for a PF future, no matter how we get there. mel could not of said it any better...a very sad day indeed ... .....Lenny
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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: RIP O.U.C.H. Reply #21 - Apr 9^th, 2012 at 10:47am Melissa wrote on Apr 8^th, 2012 at 7:50pm: Many, many thanks to ALL clusterheads & supporters who helped to run OUCH. Your valuable service was very much appreciated!!!!! My wish and hope for all of us, is for a PF future, no matter how we get there. mel Well said, Mel!
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Grandma_Sweet_Boy

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Re: RIP O.U.C.H.
Reply #22 - Apr 9^th, 2012 at 7:26pm

I only ever attended one convention - Milwaukee - where I met so many wonderful people - still in touch with most of them.

It's sad to see the organization have to fold,but it is surely understandable. Economy is tough - spare time is harder than ever to find.

To those who worked so very hard for the rest of us over the years, thank you from the bottom of my heart.

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Pinkfloyd

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Re: RIP O.U.C.H.
Reply #23 - Apr 10^th, 2012 at 1:01am

Clusterbusters is saddened by the recent announcement that OUCH U.S. has made the decision to close.

OUCH was formed at a time when there was no organization to turn to for cluster headache support. There was no united voice. Born of an idea to get recognition and help for cluster headache sufferers when it was hard enough to just find ANYONE else with clusters, let alone find a doctor that had ever even heard of the disorder.

Over the years, OUCH members have devoted thousands of hours of hard work dedicated to helping others. Because of their efforts, lives were changed...lives were saved. Everyone involved should feel proud about stepping up and making a difference.

The hardest work is done when there is no network to rely upon. To change just one life for the better is an accomplishment of which to be proud. To change the landscape of how the suffering of a subset of worldwide human beings is viewed, treated, heard, and most importantly respected, is not only admirable, but heroic.

Thank you all for supporting and improving the lives of so many.

Bob Wold
Clusterbusters

"those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience."
- C.S. Lewis
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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: RIP O.U.C.H. Reply #24 - Apr 10^th, 2012 at 1:41am Yes, that's a good memory, Bob.
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