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Title: Important Info!!! Post by catlind on Sep 10th, 2003, 2:43pm Dr. Bigal and Lori Choyce (our speakers from this years annual convention for OUCH) are moving forward with the quality of life survey. They need to know how many people will participate in this survey. There are currently just over 1000 members of OUCH. If you are not a member, go join, and then reply to this message to let me know how many of you intend to participate in the survey. The purpose of this survey is to assess the impact on quality of life that CH has. This info is imperative to any further research as well as to getting current meds labeled for CH use. If you want to do something about your affliction, start with this... If we don't get enough respondants, there will not be sufficient data for the New England Research Institute to begin some very promising research into the treatment of the CAUSE of CH. Cat |
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Title: Re: Important Info!!! Post by Lori on Sep 10th, 2003, 2:47pm I will be happy to help..didn't know about this so just tell me who I need to contact. Thanks.. |
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Title: Re: Important Info!!! Post by JDH on Sep 10th, 2003, 2:50pm on 09/10/03 at 14:47:53, Lori wrote:
Ditto Jim |
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Title: Re: Important Info!!! Post by catlind on Sep 10th, 2003, 2:51pm Right now I am just gathering numbers for them. They need to have a good estimate of how many participants there will be before it goes any further. This will be done through the OUCH membership as that is the easiest way to get this done. If you are not a member of OUCH, you need to go join, it's free. Cat |
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Title: Re: Important Info!!! Post by Melissa on Sep 10th, 2003, 3:02pm will the survey be emailed or snail mailed? or will it be done in person? just wonderin.... :) oh yeah, P.S.~ YES I am in too! |
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Title: Re: Important Info!!! Post by KingOfPain on Sep 10th, 2003, 3:17pm O.U.C.H. Member here. Count me in. KingOfPain |
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Title: Re: Important Info!!! Post by sadsue on Sep 10th, 2003, 3:20pm i'M NEW TO ALL THIS- JOINED CLUSTERHEADS LAST SUNDAY AND O.U.C.H. TOO. PLEASE COUNT ME IN! |
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Title: Re: Important Info!!! Post by ozzman on Sep 10th, 2003, 3:20pm Cat, I'm glad they didn't lose interest. I was afraid they did. Absolutely count me in and I will certainly hammer the message home at the PA-NJ meeting. Everyone should participate. I can't think of any excuse why somebody wouldn't. Ozzy |
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Title: Re: Important Info!!! Post by ave on Sep 10th, 2003, 3:33pm If being a different nationality is no problem, I'll join. |
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Title: Re: Important Info!!! Post by Linda_Howell on Sep 10th, 2003, 3:51pm Hand is up cat. LindaH |
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Title: Re: Important Info!!! Post by miCHel on Sep 10th, 2003, 3:57pm If our opinion is worth more than our money, this Canadian dude is in ;D miCHel |
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Title: Re: Important Info!!! Post by Elaine on Sep 10th, 2003, 4:25pm I will ! I would do anything to help ! |
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Title: Re: Important Info!!! Post by suzy617 on Sep 10th, 2003, 4:29pm I'm in! Suzy |
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Title: Re: Important Info!!! Post by cootie on Sep 10th, 2003, 4:36pm In like Flint here (man that's an old saying isn't it....does anyone remember that one ? ) Ouch member family Pam |
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Title: Re: Important Info!!! Post by jonny on Sep 10th, 2003, 4:39pm ;D :o ;D :o ;D :o ;D :o .........................jonny 8) |
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Title: Re: Important Info!!! Post by stevegeebe on Sep 10th, 2003, 5:17pm Add me please. Steve G |
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Title: Re: Important Info!!! Post by eyes_afire on Sep 10th, 2003, 5:24pm This is a no-brainer. Count me in. Sometimes people wonder... 'what can I do to help, just let me know'. Here's the chance! --- Steve |
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Title: Re: Important Info!!! Post by TxBasslady on Sep 10th, 2003, 5:28pm ;D I'm game, count me in !!!!!! |
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Title: Re: Important Info!!! Post by ClusterChuck on Sep 10th, 2003, 6:16pm To quote a famous donkey "Pick me, Pick Me, Pick me, me, me, me, " Chuck |
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Title: Re: Important Info!!! Post by Not4Hire on Sep 10th, 2003, 6:44pm yep..ya know where to find me.... ..the *quality* part is a bit worrisome tho.... ;D |
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Title: Re: Important Info!!! Post by Opus on Sep 10th, 2003, 6:56pm Cat, This OUCH member is willing. Opus/Paul |
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Title: Re: Important Info!!! Post by Karla on Sep 10th, 2003, 7:04pm Count me in. Whatever I can do to help. |
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Title: Re: Important Info!!! Post by Mark C on Sep 10th, 2003, 7:04pm Proud O.U.C.H. (http://www.clusterheadaches.org/) member who is more than willing to participate. Let me know what to do. PFDAN's Mark |
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Title: Re: Important Info!!! Post by ShariRae on Sep 10th, 2003, 7:40pm Count me in too! Shari |
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Title: we'll see Post by rumplestiltskin on Sep 10th, 2003, 8:47pm Of course Georgia and I are in. She never even responded to my request for help (7-31-03 e-mail)...butt...I'll help them IF there's a chance it helps us. den |
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Title: Re: Important Info!!! Post by Darleen on Sep 10th, 2003, 9:10pm We'll do anything we can. Count us in. D :) |
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Title: Re: Important Info!!! Post by Charlie on Sep 10th, 2003, 9:12pm I'm cool Charlie 8) |
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Title: Re: Important Info!!! Post by Edna on Sep 10th, 2003, 9:20pm waiting for what I should do next EDNA |
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Title: Re: Important Info!!! Post by Mastifflvr28 on Sep 10th, 2003, 9:21pm I'm there!! Mast |
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Title: Re: Important Info!!! Post by Roxy on Sep 10th, 2003, 9:30pm Just tell me what to do...... ;D |
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Title: Re: Important Info!!! Post by Lori on Sep 10th, 2003, 10:15pm Yes, count me in..incase you didn't already. :) |
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Title: Re: Important Info!!! Post by Jimi on Sep 10th, 2003, 10:25pm :oAdd me to your list as well. :o |
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Title: Re: Important Info!!! Post by Drk^Angel on Sep 10th, 2003, 11:14pm Another survey?? I don't need a no. 2 pencil for it do I? I'm sure I have one around here somewhere, but I'm afraid to look for it... Never know what I'll find under the junk under my bed... Might be kinda scary... PFDAN............................... Drk^Angel |
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Title: Re: Important Info!!! Post by elcid on Sep 10th, 2003, 11:41pm I am an O.U.C.H. member and would be pleased to participate. Thanks. |
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Title: Run, ye Sinners Post by Mr.Happy on Sep 10th, 2003, 11:51pm Abxolutely not. This is just another subterfuge to rob us of our precious bodily fluids. Yours in diuretics, RJ |
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Title: Re: Important Info!!! Post by Callico_Kid on Sep 11th, 2003, 12:12am Count me too! Glad someone is taking interest! jc |
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Title: Re: Important Info!!! Post by Peppermint on Sep 11th, 2003, 8:47am an FYI bump. |
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Title: Re: Important Info!!! Post by AlienSpaceBabe on Sep 11th, 2003, 8:52am Quality of life? or LACK of quality of life? I'm in..... |
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Title: Re: Important Info!!! Post by kim on Sep 11th, 2003, 8:54am Oooooooops! :) Just readin this. You betcha! |
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Title: Re: Important Info!!! Post by tommyD on Sep 11th, 2003, 10:06am Sign me up. -tommyD |
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Title: Re: Important Info!!! Post by forgetfulnot on Sep 11th, 2003, 10:42am OOOOOOOOoh Ya Lee |
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Title: Re: Important Info!!! Post by justagirl on Sep 11th, 2003, 11:14am Count me in :) |
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Title: Re: Important Info!!! Post by Smurf on Sep 11th, 2003, 11:30am -Cat, I'm in. - Smurf |
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Title: Re: Important Info!!! Post by catlind on Sep 11th, 2003, 1:16pm For anyone who is new, or who missed the convention report after it was finished, you can read the report and the part that covers the quality of life survey here: http://www.clusterheadaches.org/members/discus/messages/23/235.html?1061576531 (scroll to the last post) If you are not yet a member of OUCH you will need to join to access this part of the forum. Remember folks, this is the info that will further everything to do with research and medications, and getting this recognized in the medical community. Cat |
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Title: Re: Important Info!!! Post by Eb on Sep 11th, 2003, 1:20pm I'm in....member of OUCH too. Will check there as well. Thx for bringing this to everyone's attention!! Eb |
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Title: Re: Important Info!!! Post by Cerberus on Sep 11th, 2003, 1:25pm UssCerebus Reporting: count me in...... Ramon |
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Title: Re: Important Info!!! Post by aprilbee on Sep 11th, 2003, 1:27pm Just joined OUCH, you can count me in too! |
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Title: Re: Important Info!!! Post by Orion on Sep 11th, 2003, 2:04pm I'm in too. |
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Title: Re: Important Info!!! Post by aprilbee on Sep 11th, 2003, 2:07pm Cat, Just read the convention report you posted, it is so interesting, I can't quit reading it!! I'm printing it out and taking it to my doc... |
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Title: Re: Important Info!!! Post by gtar_man on Sep 11th, 2003, 2:07pm Da Gtarman is in... |
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Title: Re: Important Info!!! Post by totka on Sep 11th, 2003, 2:23pm Count me in |
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Title: Re: Important Info!!! Post by fubar on Sep 11th, 2003, 2:34pm Quality of what? Ya, count me in. |
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Title: Re: Important Info!!! Post by andy on Sep 11th, 2003, 2:47pm YEP ............andy |
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Title: Re: Important Info!!! Post by 5-string on Sep 11th, 2003, 2:49pm I'm in,I'm in,I'm in..... If were not careful, someone just might find a cure for this one of these days. :D |
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Title: Re: Important Info!!! Post by gmlevenhagen on Sep 11th, 2003, 2:54pm I am new hear just joined today as well as Ouch count me in! |
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Title: Re: Important Info!!! Post by Jayne on Sep 11th, 2003, 3:07pm My Hand is up! |
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Title: Re: Important Info!!! Post by Tim_w on Sep 11th, 2003, 3:57pm Cat I'm Game!!!!!!!!!! ;D Tim_w |
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Title: Re: Important Info!!! Post by Mikey on Sep 11th, 2003, 5:15pm Definately count Mikey in! |
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Title: Re: Important Info!!! Post by SFChris on Sep 11th, 2003, 6:09pm Cat - I will happily participate as well. Chris |
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Title: Re: Important Info!!! Post by 9erfan on Sep 11th, 2003, 6:49pm I'm in! |
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Title: Re: Important Info!!! Post by catlind on Sep 12th, 2003, 7:37am C'mon folks, we need a heck of alot more participation than 60 people. Email me at catlind@cox.net, reply here, IM me or reply over on the OUCH members forum board. Everything we want done, research, meds for CH etc., all that requires this data to justify the cost of the research. OUCH is over 1000 members strong. This will cost you nothing to participate and you have EVERYTHING to gain. I expect the fullest participation from EVERYONE. If you do not voice a desire to participate in this survey then you must not want to see anything done about your affliction. This is the chance for you to make yourself heard, and have it count. Stepping off the soap box now... Cat |
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Title: Re: Important Info!!! Post by judyw on Sep 12th, 2003, 8:17am Count me in catlind...whatever it takes... ::) |
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Title: Re: Important Info!!! Post by StanTheMan on Sep 12th, 2003, 2:42pm I'm in, Cat! Stan :) |
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Title: Re: Important Info!!! Post by wayner57 on Sep 12th, 2003, 2:51pm I'm new here, but if I can help I will! |
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Title: Re: Important Info!!! Post by BobG on Sep 12th, 2003, 3:02pm I'm in. |
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Title: Re: Important Info!!! Post by Kenzie60 on Sep 12th, 2003, 7:10pm ;D ;D ;D ;D ;D Count me in!!!! Roseanne |
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Title: Re: Important Info!!! Post by OneEyeBlind on Sep 12th, 2003, 9:17pm yea, yea, yea |
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Title: Re: Important Info!!! Post by Zonie on Sep 12th, 2003, 9:36pm This group of CHeads should be the most valuable asset to any research being done to help us out. I cannot imagine anywhere else that more knowledge about our symptoms, quality of life, different treatments, etc., etc., etc., could be obtained. I'm just thankful that someone really cares enough to ask! I'll be more than happy to answer any questions. |
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Title: Re: Important Info!!! Post by tsayswhy on Sep 12th, 2003, 9:54pm on 09/10/03 at 15:57:55, miCHel wrote:
if one Canadian is in well then make it two! :D |
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Title: Re: Important Info!!! Post by surfshi on Sep 12th, 2003, 10:02pm I raise :) my hand with dignity and honor...Surf |
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Title: Re: Important Info!!! Post by Prense on Sep 12th, 2003, 10:46pm Absolutely! ;D |
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Title: Re: Important Info!!! Post by catlind on Sep 12th, 2003, 10:50pm on 09/12/03 at 21:36:50, Zonie wrote:
Zonie, it is. However it isn't worth the powder to blow it to hell if the CHeads that live here don't participate in the survey. Without us, there is no survey, and without the survey, we have no voice. So this is why it is so absolutely critical that I get an estimate of the number of folks that will participate. Cat |
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Title: Re: Important Info!!! Post by Mr.Happy on Sep 12th, 2003, 11:39pm You know, Cat, it seems to me......that when Items of Magnitude come along, it would behoove OUCH@clusterheadaches.org to send each and every member an Email notification of such. Hoping they visit the boards for updates is not realistic. I'd like to say Email notification is the least we could do, but the least we could do is _Nothing_ jones16@comcast.net, RJ |
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Title: Re: Important Info!!! Post by catlind on Sep 13th, 2003, 8:50am Already in the works Hap :) BobP is making a list and checking it twice ;) The more participation the better the data, the better the data, the more likely we are to get help and research. Imagine, a potential cure! But not if you don't participate in the survey. Cat |
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Title: Re: Important Info!!! Post by arby on Sep 13th, 2003, 9:12am Cat, Hope you don't mind, but I'm kicking the soap box back under your feet - you're doing a great job and a big THANK YOU is in order!!!!! One more Canadian is in! Ross |
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Title: Re: Important Info!!! Post by godsjoy on Sep 13th, 2003, 9:30am I'm in.....Just joined OUCH under my new married name....so I hope to help any way I can. Blessings, Karen |
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Title: Re: Important Info!!! Post by K. on Sep 13th, 2003, 10:45pm Count me in Cat. I'm an ouch member. Just let me know what to do. K......I noticed there is another Karen on here so I better just use K. so there is no confusion?? |
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Title: Re: Important Info!!! Post by BillyJ. on Sep 14th, 2003, 12:11am count me in BillyJ |
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Title: Oops.......... Post by Mr.Happy on Sep 14th, 2003, 12:30am on 09/13/03 at 09:30:14, godsjoy wrote:
Karen, I tried that. They didn't fall for the fake wife thing. Got an appt w/the INS tomorrow. And to think, I married for love........... Heart-ily yours, RJ |
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Title: Re: Important Info!!! Post by nancyc on Sep 14th, 2003, 1:12am Sign me up, sis.....smiles,nancyc |
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Title: Re: Important Info!!! Post by Elaine on Sep 14th, 2003, 9:03am bump |
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Title: Re: Important Info!!! Post by taraann on Sep 14th, 2003, 3:30pm I'm in.....though quality of life...hmmmmm i dont have a life lol |
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Title: Re: Important Info!!! Post by Homer on Sep 14th, 2003, 3:44pm Just got a bulk email from OUCH 10 minutes ago. Been suffering 40 years. Of course I'm in. |
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Title: Re: Important Info!!! Post by kissmyglass on Sep 14th, 2003, 3:55pm I'm In..... Kev |
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Title: Re: Important Info!!! Post by DaveHar on Sep 14th, 2003, 4:07pm Count me in. If I can help I will! It is good to see even more progress being made and more attention being given to the beast and the hell he causes. Dave and Leesa |
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Title: Re: Important Info!!! Post by Ree on Sep 14th, 2003, 5:20pm Dave and I will definately do it... let us know what to do...Ree(ps they said headache right I have that too) |
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Title: Re: Important Info!!! Post by maggie_may on Sep 14th, 2003, 5:41pm I'm in.. anything to help! maggie |
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Title: Re: Important Info!!! Post by brain_cramps on Sep 14th, 2003, 6:09pm i'm in grant |
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Title: Re: Important Info!!! Post by Major_Headcase on Sep 14th, 2003, 10:01pm "Mongo like sirvays!" ;D - I'm in!! |
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Title: Re: Important Info!!! Post by jmorgan52 on Sep 15th, 2003, 3:17am count me in John |
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Title: Re: Important Info!!! Post by Turts on Sep 15th, 2003, 7:10am count me in 2. And its not that I buckled under the intense 5 page peer pressure either |
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Title: Re: Important Info!!! Post by M.R. on Sep 15th, 2003, 12:03pm Count me in. Mike |
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Title: Re: Important Info!!! Post by Noel on Sep 15th, 2003, 3:57pm Be glad to participate |
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Title: Re: Important Info!!! Post by Kenzie60 on Sep 15th, 2003, 4:03pm ;DCount me in!!!!! ;D Roseanne |
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Title: Re: Important Info!!! Post by BILL_L on Sep 15th, 2003, 6:29pm IN |
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Title: Re: Important Info!!! Post by 2late on Sep 15th, 2003, 6:33pm since the turnout ain't so good, i'm in ;D .............Jack |
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Title: Re: Important Info!!! Post by Joanie on Sep 15th, 2003, 8:21pm Sent you an e-mail Cat...... Count me in! Joanie |
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Title: Re: Important Info!!! Post by klp on Sep 15th, 2003, 9:43pm sign me up also. krista |
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Title: Re: Important Info!!! Post by catlind on Sep 16th, 2003, 7:47am GREAT news folks! We have about 200 respondents so far!! This is the kind of thing that I love to see people stepping up to the plate for :) As soon as I have any info to give you on the status of the survey I will let everyone know. Anyone who emailed me I will try to get back to you with a response if you requested one, it will take a few days though since there are so many in my inbox (this is a GOOD thing!) I love when the team comes together to make a difference :) Keep those replies coming! Cat |
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Title: Re: Important Info!!! Post by kimmyv1966 on Sep 16th, 2003, 6:30pm GAME ON! |
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Title: Re: Important Info!!! Post by Mastifflvr28 on Sep 17th, 2003, 12:17am My turn to bump... I won't bring out the cheerleader just yet... Mast |
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Title: Re: Important Info!!! Post by Kirk on Sep 17th, 2003, 12:35am Count me in TTFN |
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Title: Re: Important Info!!! Post by kissmyglass on Sep 17th, 2003, 8:12am Irma's in... since Glaxo cut off my Imitrex shots >:( I'm fuckin up her "Quality of life" too..... Kev |
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Title: Re: Important Info!!! Post by jeff_a on Sep 17th, 2003, 3:12pm 18 years of CH............. i'm ready to help or be helped jeff a |
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Title: Re: Important Info!!! Post by CC on Sep 17th, 2003, 3:18pm I'm In!!!! |
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Title: Re: Important Info!!! Post by don on Sep 17th, 2003, 3:33pm I made a mistake. I joined (O)rganization for (U)ncoordinated (C)opulating (H)eathens. What the hell. I'm in anyway. |
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Title: Re: Important Info!!! Post by BarbaraD on Sep 17th, 2003, 3:36pm I'm in BD |
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Title: Re: Important Info!!! Post by grumpett on Sep 17th, 2003, 9:36pm I am in. let me know what to do! |
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Title: Re: Important Info!!! Post by jim_bo on Sep 17th, 2003, 11:00pm What ever I can do |
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Title: Re: Important Info!!! Post by nils on Sep 18th, 2003, 1:04am I will be happy to help. |
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Title: Re: Important Info!!! Post by Koda on Sep 18th, 2003, 3:04pm Would LOVE to participate in any survey available! Thanks Robin |
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Title: Re: Important Info!!! Post by Ree on Sep 18th, 2003, 6:58pm bumppppppppppppp |
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Title: Re: Important Info!!! Post by Ree on Sep 18th, 2003, 7:36pm how many times can a person bump before its illegal |
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Title: Re: Important Info!!! Post by Prense on Sep 18th, 2003, 7:37pm depends on who or what yer bumpin... ;D |
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Title: Re: Important Info!!! Post by Mastifflvr28 on Sep 19th, 2003, 1:44am ok, cheeleader time :) http://www.maplefallswebdesign.com/misc/pompom.gif Mast |
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Title: Re: Important Info!!! Post by Carl_D on Sep 19th, 2003, 3:32am AYE!!!! JUst wondering if this is the same study Dr Supernaw is doing with med students. I already emailed him and got in, just waiting for a student to be assigned to me. If this is different, count me in! Peace, Carl D |
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Title: Re: Important Info!!! Post by catlind on Sep 19th, 2003, 6:32am No Carl this is nothing at all to do with Dr. Supernaw. This is a study that the New England Research Institute, in conjuction with the New England Headache Center is doing to gather the impact data for CH. My understanding is that all research into any meds or diseases requires this data before they can lobby for funding for research and it proves a serious impact on society (lost work time etc) and the NEED for further research and more effective meds. It will also be used to get certain meds that are for migraines labelled for use on CH as well. (That should in turn help with insurance probs) When I have more info about the details I will post it. Right now they are just wanting an estimated number of participants because they have to pay for it all and want to know in advance how many people they may be dealing with. Cat |
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Title: Re: Important Info!!! Post by ClusterChuck on Sep 19th, 2003, 6:41am Catlind, what is the count up to now? Everyone else: If you have not done it yet, SIGN ON! If you don't sign up, we are going to have to put up with Chuck |
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Title: Re: Important Info!!! Post by Mastifflvr28 on Sep 19th, 2003, 8:50am tee hee chucky, I'm such a pain in ass, eh? oh, this is a bump:) Mast |
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Title: Re: Important Info!!! Post by Ree on Sep 19th, 2003, 9:05am I love that cheer leader shes as cute as my http://www.netsync.net/users/charlies/gifs/Yea%20Congrats.artgirl.................... ps hi cat.........love ya and you too mast miss you girls and that porch.... I need porch.............anybody got some good porch? Ree banana..........oooooooo did I tell you Sean is comin home!!!!!!!!!!!!! |
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Title: Re: Important Info!!! Post by Roxy on Sep 19th, 2003, 10:10am Ree, that is great news about Sean......when's he supposed to get home? :) .....oh yeah.....bump, bump, bump |
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Title: Re: Important Info!!! Post by Mastifflvr28 on Sep 19th, 2003, 9:40pm OMG...this fell to the middle of the second page. HOW did THAT HAPPEN??? congrats REE!!!! And my cheerleader is a little too big to put as my signature. LOVE your Yea girlie :) oh yeah...bump :) Mast |
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Title: Re: Important Info!!! Post by tommyD on Sep 22nd, 2003, 5:43am Who hasn't signed up for this yet? |
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Title: Re: Important Info!!! Post by badfly on Sep 22nd, 2003, 5:56am Im in !! |
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Title: Re: Important Info!!! Post by surfshi on Sep 22nd, 2003, 11:51am Did I raise my hand to this? Yup count me into...Surf |
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Title: Re: Important Info!!! Post by ClusterChuck on Sep 23rd, 2003, 2:31pm What is that in the road ahead? Why it looks like a BUMP! |
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Title: Re: Important Info!!! Post by ebk3 on Sep 24th, 2003, 10:05pm I've joined, let me know how I do the survey Gene |
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Title: Re: Important Info!!! Post by zanychef on Sep 25th, 2003, 5:14pm wtf! why not i'm in! |
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