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Title: CH Awareness Contest Post by Gator on Aug 5th, 2006, 3:15pm During Svenn's presentation at the OUCH Convention this year, he issued a challenge to all members to come up with ideas to help raise awareness of CH. In order to hopefully spark some interest, OUCH will award an OUCH T-Shirt and Baseball Cap to the person with the best suggestion. Please submit your ideas to contest@ouch-us.org no later than midnight, September 1, 2006. The OUCH Board of Directors will serve as contest judges and announce the winner on September 15, 2006. Mike Day Vice President OUCH US |
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Title: Re: CH Awareness Contest Post by kevinpix on Aug 6th, 2006, 12:09am How about a cycle-your-pain-away bike ride!! Like the MS-150 bike rides. We could get local sponsors for oranges, snacks, powerade, maybe even sodas! I work for Kroger, the company sponsors all kinds of local events. That's my two cents worth! I think just doing something is enough to get public awareness going for our condition!!! |
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Title: Re: CH Awareness Contest Post by The mad viking on Aug 7th, 2006, 3:21am Bump |
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Title: Re: CH Awareness Contest Post by Racer1_NC on Aug 7th, 2006, 12:26pm TTT |
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Title: Re: CH Awareness Contest Post by JeffB on Aug 7th, 2006, 12:28pm It's funny, the only time I've heard CH refrenced is by my Dr. and from those pepper spray for headache people. |
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Title: Re: CH Awareness Contest Post by Gator on Aug 8th, 2006, 12:56am on 08/07/06 at 12:28:42, JeffB wrote:
You're lucky. A lot of clusterheads never even hear it from their doctors. They just keep getting misdiagnosed, mistreated, ignored or labeled as being drug seekers or mentally unstable. This is part of the reason for this contest. We are reaching out to the clusterhead community for ideas on how to get the word out to other sufferers, their families and their doctors. We've pretty much seen that if we want help, we have to help ourselves. Submit your ideas on how to raise CH awareness to contest@ouch-us.org today. |
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Title: Re: CH Awareness Contest Post by Jonny on Aug 8th, 2006, 7:26pm Royal Bump!! 8) |
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Title: Re: CH Awareness Contest Post by Gator on Aug 11th, 2006, 7:26pm Is it possible that only two people out of over 10,000 have any ideas for increasing awareness of CH? Come on folks. Get those brains in gear and submit your ideas to contest@ouch-us.org. This is for every person who suffers or supports someone who does or depends on someone who does. I guess what I am trying to say is: BUMP! |
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Title: Re: CH Awareness Contest Post by maffumatt on Aug 11th, 2006, 7:48pm Maybe someone should give the makers of Red Bull a call and let them know how many of us use thier products to help abort the pain. Perhaps that would be a marketing angle for them and free publicity for us. Matt Edited to add..........does it hilp migrainers too? |
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Title: Re: CH Awareness Contest Post by gore2424 on Aug 12th, 2006, 12:40am How about a cd or news letter with the info about Ouch website and Cluster Buster site plus Milcon convention speakers lectures. Then have an OUCH member wearing their OUCH shirt and hat to take copies to their town and local towns neuro offices and pain clinics and hospitals. I delivered 50 letters with the convention info and the guest speakers to the ones around DavCon here. Altho I dont believe anyone went there BUT I had put my name and address and email also on letter and got 2 phone calls and 1 email. I gave the 3 people the OUCH web site and they were going to reserch it and take new info about their cluster headaches to their Dr's and all 3 were very very happy to find out that they are not alone as they thought. So I feel really proud to be part of OUCH and I know that I can help other sufferers and their loves ones make a big difference in their lives by just helping them by giving them the info that I believe all Dr's ,neuro's and pain clinnics and hospitals should have. Terry (opps ok I sent this also to email address given above ) |
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Title: Re: CH Awareness Contest Post by The mad viking on Aug 13th, 2006, 2:39am TTT |
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Title: Re: CH Awareness Contest Post by lionsound on Aug 13th, 2006, 6:45am I also have two ideas that were handed to me by attendees at the convention :) |
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Title: Re: CH Awareness Contest Post by kevinpix on Aug 13th, 2006, 3:20pm I know, we could have a dunking booth with me in the booth. |
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Title: Re: CH Awareness Contest Post by Jonny on Aug 13th, 2006, 3:27pm on 08/13/06 at 15:20:59, kevinpix wrote:
Now thats using your head.....LOL ;;D |
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Title: Re: CH Awareness Contest Post by kissmyglass on Aug 13th, 2006, 7:03pm Next time your in a neuros office (any Doctor will be fine) who knows squat about CH, hit him over the head, while he is out cold tattoo OUCH across his forehead. Pretty soon most neuros and most of their patients will know what CH is! Want my address where to send the shirt?? ;;D Kev |
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Title: Re: CH Awareness Contest Post by Mosaicwench on Aug 13th, 2006, 7:09pm We need a celebrity to increase awareness. A pretty talking head always draws attention. If Oprah had CH your meds would be delivered by limousine free of charge and your research dollars would be in the gazillions. Any one ever hear of a celebrity who has CH? |
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Title: Re: CH Awareness Contest Post by Charlotte on Aug 14th, 2006, 9:03am I would like to see a pamplet, briefly listing what ch is and isn't, with a reference paragraph on similar headaches with internet address listed for personal research. It could be on recycled paper, even without pictures, but in easy to understand typeface with clear statements. Although it is complicated, simple presentation would be good. Ouch has a pamphlet, and it is good, but I never saw it until I met ouchers. I'd like to see this one at Kaiser (etc), Dr offices, and clinics. Mosaic's idea was good. Does Jennifer Lopez have ch? Charlotte |
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Title: Re: CH Awareness Contest Post by Dragnlance on Aug 14th, 2006, 9:14am You know, Char has a good idea. When I was at my neuro's office last, they had tons of pamphlets on all kinds of things, from foot fungus to MS. I even saw one on migraines too. Put my vote in with CHar's idea Dragn |
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Title: Re: CH Awareness Contest Post by athos on Aug 15th, 2006, 6:30am Adding to char's. Go beyond a pamphlet. Once upon a time when I was actually involved with OUCH. I came up with an Idea of creating a mailable poster that you could mail to Nuero's and other doc's... The idea being that people sitting in exam rooms have nothing to look at but the posters and crap on the walls... Why not a CH one. New idea just hit me with it as well... offer sponsering in order to pay for the printing and the postage. I don't know how many times I have seen the Parkinsons Disease posters, MS, and hell imetrex has a migraine one. That way the Doc's and the patients will be educated. --Ken |
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Title: Re: CH Awareness Contest Post by Racer1_NC on Aug 17th, 2006, 12:43am ttt |
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Title: Re: CH Awareness Contest Post by The mad viking on Aug 20th, 2006, 6:12pm ttt |
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Title: Re: CH Awareness Contest Post by kayarr on Aug 20th, 2006, 6:46pm I just wrote to the Oprah show...who knows???? |
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Title: Re: CH Awareness Contest Post by andrewjb on Aug 20th, 2006, 7:35pm putting my thinking cap on. :).bump. |
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Title: Re: CH Awareness Contest Post by Gator on Aug 24th, 2006, 1:34pm http://bestsmileys.com/bumping/3.gif |
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Title: Re: CH Awareness Contest Post by Carl_D on Aug 24th, 2006, 1:48pm http://i51.photobucket.com/albums/f359/Mack420Danger/Aug%20pics/Guitarship.jpg Every gig I have ever used this guitar at since putting the sticker on it, someone always asks me about it and I tell them what CH is. Spreading awareness one stage at a time. ;) Carl D |
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Title: Re: CH Awareness Contest Post by crftymom on Aug 24th, 2006, 11:13pm I write Oprah evey day about CH. If everyone does this maybe she'll do a show!!I started out a few months ago doing this every teo weeks. I haven't heard anything. So last week I decided to sit down for a few minutes every day to write or copy and paste info from this site to her. Sometimes getting annoying is the only way to get any action!! |
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Title: Re: CH Awareness Contest Post by Carl_D on Aug 24th, 2006, 11:47pm on 08/24/06 at 23:13:03, crftymom wrote:
I think Oprah has received about 20'000 messages about CH from various people on this board over the years, including me. I am convinced the only way to get Oprah's attention is to set yourself on fire for charity, have sex with Tom Cruise, seek Dr Phil's useless wisdom, or dig up dirt on her and Gayle! I've thought for years of how to get the word out about CH and what it is, and the best I came up with is writing a book. We'll see where it goes from there. I have a screenwriter who has expressed interest in writing the screenplay for it, and if the book was ever made a feature film - there is enough twisted shit in this book besides CH to make it explosive. The funny thing is, every horror in this book isn't fiction, but real. Peace, Carl D |
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Title: Re: CH Awareness Contest Post by crftymom on Aug 25th, 2006, 12:28pm I understand that people have wrote her thousands of e-mails over the years. But what if the people on this board got together and on a daily basis wrote her not just about CH, but how it affects our lives. Those nights that people get on here desperate bc of the pain. Let her hear and see that side. Not just the stats and general info. The real harsh side of the beast. If we can all clog up her e-mail with this maybe she'll take notice. I just don't see how it can hurt. It will just take effort from all of us. I am new to this site and to Ch. But I have had no luck with finding info other then this site or Dr.'s to help my son. So if I can help in any small way to try to get attention for this, I am going to explore every avenue. So any other ideas I am willing to try. |
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Title: Re: CH Awareness Contest Post by Gator on Aug 25th, 2006, 3:11pm It could also cause her IT department to dump any incoming e-mail with CH or cluster headache in the e-mail into the trash without being seen. I think the quickest way to get that kind of national attention by one of the daily womens' shows would be for a woman who went years misdiagnosed and mistreated to make the local papers/news with her story. If it jerked the heart strings enough, then the story would pick up wider circulation and may become a national story. This is why, between August 2004 and June 2005, I asked for people, women in particular, to write down their stories of years of misdiagnosis, mistreatment, inapproriate surgical intervention, etc. Many people agreed it was a good idea and several even said they would send their story to me. To this date I have never received one story. Folks, we're not going to get any help until we get off our asses and help ourselves. Excuse me, but I have to go take an aspirin and lay down now. :P |
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Title: Re: CH Awareness Contest Post by Sandy_C on Aug 25th, 2006, 5:03pm For me, the most profound thing I've ever read or seen, that brought home just what a cluster headache is, was Chuck's video. It's an awesome challenge to get the word out to those who need to know. God knows, every emergency room, every clinic, every doctor and every nurse should be educated enough to recognize a cluster headache attack when they see one. Unfortunately, this is not the case. Going on Oprah would be awesome, but her show is bombarded daily with please air "how to cure cancer" to "how to cure toenail fungus". If you want Oprah, 20,000 e'mails from us is not going to do the trick. We need heavy duty docs to do that. One - and only one correspondence from OUCH should be sent- and I would not recommend it NOT be done by e-mail, asking her producers to at least look into this disease. Send Chuck's video along with information from Dr. Goadsby, get as many high powered docs as we can to add their information with letters of their attempts to find meds that abort/end CH. We can ask the docs to also add case histories of their CH patients and how it has completely taken over their lives, how their daily lives have been destroyed by this disease. All in one package - by mail - not e-mail. This package could also be sent to others, not just Oprah. 20,000 individual e-mails to a TV celebrety from each us just won't cut the mustard. Sandy |
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Title: Re: CH Awareness Contest Post by georgej on Aug 26th, 2006, 11:38pm Bumpage. Only a few days left, folks. Unfortunately, I'm suffering from an imagination deficiency with this one. Best, George |
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Title: Re: CH Awareness Contest Post by crftymom on Aug 27th, 2006, 2:32am OK, so I have sat here on and off all day, reading. The whole contest thing seems to have provoked thought. And maybe if we put some of the thoughts together, contest aside, we could come up with a great way to get awareness out. The whole Utube idea is great. And a lot of people do see that. But what about making a documentary. With all sides, like tanner said. And if clusterchuck's video, and maybe others could be included, it would really catch attention. Not that anyone's pain should be reason to take notice, but fact is people would have more empathy for Ch. Then as a collective, it could be submitted to Independant Film Festivals. With any and all proceeds to benifit OUCH and CH research. And with all the producers out there at film fest, maybe it could attract some international attention. Just a thought. |
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Title: Re: CH Awareness Contest Post by Jonny on Aug 27th, 2006, 2:40am Im doing my part, just dont have any new ideas. http://im1.shutterfly.com/procserv/47b3ce27b3127cce9fbec025813b00000016108AZM2bNk5bM6 |
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Title: Re: CH Awareness Contest Post by Melissa on Aug 27th, 2006, 7:44am on 08/25/06 at 17:03:22, Sandy_C wrote:
BINGO! If you want TV, you need a VISUAL. Letters just don't do that, but look at the impact Chucks video has made already! I would hope that more video of attacks will pop up in the future. I have been seriously tossing around the idea of having Jesse tape me during an attack. There are a couple things that worry me about this, but we'll see what happens next cycle when I'm "in the moment". I am scared shitless, because I am thinking about going through one bout untreated (yes, that means no O2 also). BUT, hopefully I'll lose inhibition and ask Jesse to do it and not dwell on the damn thing myself. We'll see what happens... :-/ |
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Title: Re: CH Awareness Contest Post by The mad viking on Aug 27th, 2006, 8:12am What we really need is a tape of a female hit kip 7 or abow What we also need is a tape of a child getting hit.Helen has promised me to cover the last with Jasper when the time is right I will NOT participate in the contest since i issued it but after all is done i will give you all my ideas on how to get those politicians and tvfolks attention Svenn |
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Title: Re: CH Awareness Contest Post by Charlotte on Aug 27th, 2006, 10:01am As to Svenn's idea of showing a female getting hit, I volunteer. I get hit every two hours. Altyhough I do not have droopy eye and have an unusual frequency and am female, if I skip the last round of all meds in the evening, and skip the 4:00 & 6:00 am meds, I will be available to thrash, pace, hold the head, jump up & run around, rock, sweat, etc, in illustration. If you need me, I'm available. Charlotte p.s. I apologize. The good news/bad news is that I did not get to a 7 today even though I skipped over 12 hours of meds. |
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Title: Re: CH Awareness Contest Post by Fredmyyster on Aug 27th, 2006, 10:34am Kayarr , can you email me that address you wrote to? If enough of us write it mightmake an impact.. |
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Title: Re: CH Awareness Contest Post by Carl_D on Aug 27th, 2006, 3:39pm Well instead of just a song about CH or inspired by it... I am putting together the songs for the final FORMER disc which will be heavier and harder than anything I've done to date. I am killing off FORMER with this one, so might as well go out WITH A HARDCORE FUCKING BANG! And so far, every song going on it is either about CH or influenced by CH. This thing is gonna carry alotta rage! I just worked out the music to the first two songs this week, and Felicia's poem is the first I am going to record. Next up is an instrumental called "The Shadow" and will be very gothic with a shred solo. So, "The Loss of God" will be an album about CH! The reason I am killing off Former is, I came up with a new vision for a name, logo, style - and have the first album cover in my head. I won't go into too much detail or reveal the name en masse right now, but veryone is freaking on it, as it is th best idea I have come up with yet and musically it will be a combination of styles... with a couple of songs alt/ rock/ ....country! :o Just imagine a gothic cowboy and you'll get the idea. Other than that, my advertising space is here. http://i51.photobucket.com/albums/f359/Mack420Danger/Aug%20pics/Guitarbody.jpg http://i51.photobucket.com/albums/f359/Mack420Danger/Aug%20pics/WithGuiatr1.jpg Stay Tuned! [smiley=headbanger.gif] |
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Title: Re: CH Awareness Contest Post by sandie99 on Aug 27th, 2006, 6:07pm I see I'm not the only one who has thought about Oprah... She'd better do a show about ch one of these days! ;;D I haven't written to her and I suppose I probably shoudn't do that, either. BUT since Red Bull has helped me, I wrote a long letter to the Finnish RB web site and told them all about the impact RB has done to my life with ch pain. Well, honestly, I have no idea what I expected, but so far I have heard nothing back. It would be a small wonder if I would, though. I've had these two silly ideas buzzing on my mind. I hate to talk about unfinished business, but heck, this thread is as good place to talk about them than any other place. I've been wanting to have a ch T shirt for a while. So when I was in train for 4 hours, I wrote down a list of ch - related slogans like "Having a PF day" and "I didn't know anything about pain before I got ch". It would be cool to see them printed on T-shirts, stickers, whatever and people all around wearing them. I know that some just want to wear a cool product and don't really stop to think its meaning. But it would be great if those shirts could have some ch info printed on them, also. So someone who sees them could stop and wonder what it's all about and maybe, just maybe, get involved. I wish that we could just simply wear ch - related outfits and hit the streets with lots of ch info material to hand out to people around. Maybe I'll just buy a white t-shirt and a black pen and make myself a ch shirt. And then write some ch stuff down, print it down and start spread the word. Hmm... my uni has a notice board at the library, anyone can put leaflets in there... Now that's tempting.... Sanna |
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Title: Re: CH Awareness Contest Post by Gator on Aug 27th, 2006, 7:12pm Hey, Sandy! Put this on a t-shirt. http://www.brightok.net/~mnjday/chlogo2.jpg Note: I am NOT trying to start anything with those among us with migraines. |
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Title: Re: CH Awareness Contest Post by georgej on Aug 27th, 2006, 9:48pm El drew the icon of "the beast" that I use on my posts. I could talk to her about creating some other types of images for whatever purpose might be useful if anyone at OUCH is interested. Regards, George |
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Title: Re: CH Awareness Contest Post by georgej on Aug 29th, 2006, 1:25am TTT |
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Title: Re: CH Awareness Contest Post by zwibbs/Scott on Aug 29th, 2006, 1:55am I wrote a letter to Dateline NBC when I was in a cycle last November/December. In March they called me to get more information--I was excited as it looked good. I told my Neuro ( who is great) and they called him as well. In June I received a post card from Dateline stating Thanks but No Thanks. We approached it as something that is still in a gray area, and perhaps they could do extensive research to find out the why's. Unfortunately these news show magazines would rather show car wrecks and people injured. Just watch what they do with the horrible plane crash in Kentucky. |
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Title: Re: CH Awareness Contest Post by JenniferD on Aug 29th, 2006, 12:53pm wasn't going to say anything unless I heard somn- but 12 years ago or so, 20/20 did a segment on ch complete with several videos of different ppl during a hit. It was pretty graphic and very informative at the time. So last week, I sent a letter to ABCnews asking if they would do a medical update to their broadcast from back then and get the word out that a whole lot of nothing has been done in the 12 years since it was aired. ABC tends to like the human interest stories and speaking up for the underdog so I gave it a shot- complete with this website addy to check us out. Keeping fingers crossed but really not expecting much. Jen |
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Title: Re: CH Awareness Contest Post by zwibbs/Scott on Aug 29th, 2006, 4:32pm You're 100 % correct Jen. ABC does indeed cover personal, as well as consumer issues. I hope that you hear from them !!! Scott |
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Title: Re: CH Awareness Contest Post by Gator on Sep 28th, 2006, 8:58am On behalf of OUCH I am pleased to announce the winner of the CH Awareness Contest. Jenny H. has won with her idea to contact GlaxoSmithKline and get them to include Cluster Headaches in their Imitrex ads. If successful, cluster headaches would be mentioned several times a day, every day, and be seen and/or heard by everyone in the US who watches television, listens to the radio and/or reads magazines. Congratulations to Jenny and our most sincere thanks to all who participated. Even if you did not win this contest, your idea still may be employed in the struggle to raise awareness of cluster headache. We apologize for the delay in announcing the results and thank you all for your support of yourselves, your fellow clusterheads and OUCH. It is only by working together that more effective treatments and possibly even a cure will be discovered. |
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Title: Re: CH Awareness Contest Post by jimmers on Sep 28th, 2006, 9:19am Make sure its a "Wet T shirt" ;;D Just kiddin Jen! Great idea! My bosses fiance works for Red Bull, I'll see what I can find out. Jimmers |
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Title: Re: CH Awareness Contest Post by The mad viking on Sep 28th, 2006, 9:58am Just LOVE that idea Its really GREAT Congrat to Jenny H Svenn |
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Title: Re: CH Awareness Contest Post by wildhaus on Sep 28th, 2006, 1:11pm ALL SWISS CARS HAVE IT...... http://im1.shutterfly.com/procserv/47b6d709b3127cce8d1761b773f400000016100AbMmbFu4YsWNA But they have no idea that it stands for Clusterheadaches they believe its "Confederation Helvetique" But we know better....... Michael |
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