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New Message Board Archives >> 2003 Posts >> Important Info!!!
(Message started by: catlind on Sep 10th, 2003, 2:43pm)

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

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..

Title: Re: Important Info!!!
Post by JDH on Sep 10th, 2003, 2:50pm

on 09/10/03 at 14:47:53, Lori wrote:
I will be happy to help..didn't know about this so just tell me who I need to contact.
Thanks..


Ditto

Jim

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

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!

Title: Re: Important Info!!!
Post by KingOfPain on Sep 10th, 2003, 3:17pm
O.U.C.H. Member here.

Count me in.






KingOfPain

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!

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

Title: Re: Important Info!!!
Post by ave on Sep 10th, 2003, 3:33pm
If being a different nationality is no problem, I'll join.


Title: Re: Important Info!!!
Post by Linda_Howell on Sep 10th, 2003, 3:51pm


Hand is up cat.


               LindaH

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

Title: Re: Important Info!!!
Post by Elaine on Sep 10th, 2003, 4:25pm
I will ! I would do anything to help !

Title: Re: Important Info!!!
Post by suzy617 on Sep 10th, 2003, 4:29pm
I'm in!

Suzy

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

Title: Re: Important Info!!!
Post by jonny on Sep 10th, 2003, 4:39pm
;D :o ;D :o ;D :o ;D :o

.........................jonny  8)

Title: Re: Important Info!!!
Post by stevegeebe on Sep 10th, 2003, 5:17pm
Add me please.

Steve G

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

Title: Re: Important Info!!!
Post by TxBasslady on Sep 10th, 2003, 5:28pm
;D

I'm  game, count me in  !!!!!!

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

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

Title: Re: Important Info!!!
Post by Opus on Sep 10th, 2003, 6:56pm
Cat,
 This OUCH member is willing.

Opus/Paul

Title: Re: Important Info!!!
Post by Karla on Sep 10th, 2003, 7:04pm
Count me in.  Whatever I can do to help.

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

Title: Re: Important Info!!!
Post by ShariRae on Sep 10th, 2003, 7:40pm
Count me in too!
Shari

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

Title: Re: Important Info!!!
Post by Darleen on Sep 10th, 2003, 9:10pm
We'll do anything we can.  Count us in.

D :)


Title: Re: Important Info!!!
Post by Charlie on Sep 10th, 2003, 9:12pm
I'm cool

Charlie  8)

Title: Re: Important Info!!!
Post by Edna on Sep 10th, 2003, 9:20pm
waiting for what I should do next


EDNA

Title: Re: Important Info!!!
Post by Mastifflvr28 on Sep 10th, 2003, 9:21pm
I'm there!!

Mast

Title: Re: Important Info!!!
Post by Roxy on Sep 10th, 2003, 9:30pm
Just tell me what to do...... ;D

Title: Re: Important Info!!!
Post by Lori on Sep 10th, 2003, 10:15pm
Yes, count me in..incase you didn't already.  :)

Title: Re: Important Info!!!
Post by Jimi on Sep 10th, 2003, 10:25pm
:oAdd me to your list as well.  :o

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

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.

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

Title: Re: Important Info!!!
Post by Callico_Kid on Sep 11th, 2003, 12:12am
Count me too!  Glad someone is taking interest!
jc

Title: Re: Important Info!!!
Post by Peppermint on Sep 11th, 2003, 8:47am
an FYI bump.

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.....

Title: Re: Important Info!!!
Post by kim on Sep 11th, 2003, 8:54am
Oooooooops! :)  Just readin this.

You betcha!

Title: Re: Important Info!!!
Post by tommyD on Sep 11th, 2003, 10:06am
Sign me up.

-tommyD

Title: Re: Important Info!!!
Post by forgetfulnot on Sep 11th, 2003, 10:42am
OOOOOOOOoh Ya


Lee

Title: Re: Important Info!!!
Post by justagirl on Sep 11th, 2003, 11:14am
Count me in   :)

Title: Re: Important Info!!!
Post by Smurf on Sep 11th, 2003, 11:30am
-Cat,
I'm in. - Smurf

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

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

Title: Re: Important Info!!!
Post by Cerberus on Sep 11th, 2003, 1:25pm
UssCerebus Reporting:

count me in......

Ramon

Title: Re: Important Info!!!
Post by aprilbee on Sep 11th, 2003, 1:27pm
Just joined OUCH, you can count me in too!

Title: Re: Important Info!!!
Post by Orion on Sep 11th, 2003, 2:04pm
I'm in too.

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...

Title: Re: Important Info!!!
Post by gtar_man on Sep 11th, 2003, 2:07pm
Da Gtarman is in...

Title: Re: Important Info!!!
Post by totka on Sep 11th, 2003, 2:23pm
Count me in

Title: Re: Important Info!!!
Post by fubar on Sep 11th, 2003, 2:34pm
Quality of what?

Ya, count me in.

Title: Re: Important Info!!!
Post by andy on Sep 11th, 2003, 2:47pm
YEP       ............andy

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

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!

Title: Re: Important Info!!!
Post by Jayne on Sep 11th, 2003, 3:07pm
My Hand is up!

Title: Re: Important Info!!!
Post by Tim_w on Sep 11th, 2003, 3:57pm
Cat
I'm Game!!!!!!!!!! ;D
Tim_w

Title: Re: Important Info!!!
Post by Mikey on Sep 11th, 2003, 5:15pm
Definately count Mikey in!

Title: Re: Important Info!!!
Post by SFChris on Sep 11th, 2003, 6:09pm
Cat - I will happily participate as well.

Chris

Title: Re: Important Info!!!
Post by 9erfan on Sep 11th, 2003, 6:49pm
I'm in!

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

Title: Re: Important Info!!!
Post by judyw on Sep 12th, 2003, 8:17am
Count me in catlind...whatever it takes... ::)

Title: Re: Important Info!!!
Post by StanTheMan on Sep 12th, 2003, 2:42pm
I'm in, Cat!

Stan  :)

Title: Re: Important Info!!!
Post by wayner57 on Sep 12th, 2003, 2:51pm
I'm new here, but if I can help I will!

Title: Re: Important Info!!!
Post by BobG on Sep 12th, 2003, 3:02pm
I'm in.

Title: Re: Important Info!!!
Post by Kenzie60 on Sep 12th, 2003, 7:10pm
;D ;D ;D ;D ;D
Count me in!!!!

Roseanne

Title: Re: Important Info!!!
Post by OneEyeBlind on Sep 12th, 2003, 9:17pm
yea, yea, yea

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.

Title: Re: Important Info!!!
Post by tsayswhy on Sep 12th, 2003, 9:54pm

on 09/10/03 at 15:57:55, miCHel wrote:
If our opinion is worth more than our money, [this Canadian dude is in  ;D]

miCHel

if one Canadian is in well then make it two! :D

Title: Re: Important Info!!!
Post by surfshi on Sep 12th, 2003, 10:02pm
I raise :) my hand with dignity and honor...Surf

Title: Re: Important Info!!!
Post by Prense on Sep 12th, 2003, 10:46pm
Absolutely!   ;D

Title: Re: Important Info!!!
Post by catlind on Sep 12th, 2003, 10:50pm

on 09/12/03 at 21:36:50, Zonie wrote:
This group of CHeads should be the most valuable asset to any research being done to help us out.  


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

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

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

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

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

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??

Title: Re: Important Info!!!
Post by BillyJ. on Sep 14th, 2003, 12:11am
count me in
BillyJ

Title: Oops..........
Post by Mr.Happy on Sep 14th, 2003, 12:30am

on 09/13/03 at 09:30:14, godsjoy wrote:
I'm in.....Just joined OUCH under my new married name....

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

Title: Re: Important Info!!!
Post by nancyc on Sep 14th, 2003, 1:12am
Sign me up, sis.....smiles,nancyc

Title: Re: Important Info!!!
Post by Elaine on Sep 14th, 2003, 9:03am
bump

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

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.

Title: Re: Important Info!!!
Post by kissmyglass on Sep 14th, 2003, 3:55pm
I'm In.....


Kev

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

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)

Title: Re: Important Info!!!
Post by maggie_may on Sep 14th, 2003, 5:41pm
I'm in.. anything to help!

maggie

Title: Re: Important Info!!!
Post by brain_cramps on Sep 14th, 2003, 6:09pm
i'm in

grant

Title: Re: Important Info!!!
Post by Major_Headcase on Sep 14th, 2003, 10:01pm
"Mongo like sirvays!"  ;D   - I'm in!!

Title: Re: Important Info!!!
Post by jmorgan52 on Sep 15th, 2003, 3:17am
count me in

John

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

Title: Re: Important Info!!!
Post by M.R. on Sep 15th, 2003, 12:03pm
Count me in.

Mike

Title: Re: Important Info!!!
Post by Noel on Sep 15th, 2003, 3:57pm
Be glad to participate

Title: Re: Important Info!!!
Post by Kenzie60 on Sep 15th, 2003, 4:03pm
;DCount me in!!!!! ;D

Roseanne

Title: Re: Important Info!!!
Post by BILL_L on Sep 15th, 2003, 6:29pm
IN

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

Title: Re: Important Info!!!
Post by Joanie on Sep 15th, 2003, 8:21pm
Sent you an e-mail Cat......

Count me in!

Joanie

Title: Re: Important Info!!!
Post by klp on Sep 15th, 2003, 9:43pm
sign me up also. krista

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

Title: Re: Important Info!!!
Post by kimmyv1966 on Sep 16th, 2003, 6:30pm
GAME ON!


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

Title: Re: Important Info!!!
Post by Kirk on Sep 17th, 2003, 12:35am
Count me in

TTFN

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

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

Title: Re: Important Info!!!
Post by CC on Sep 17th, 2003, 3:18pm
I'm In!!!!

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.

Title: Re: Important Info!!!
Post by BarbaraD on Sep 17th, 2003, 3:36pm
I'm in   BD

Title: Re: Important Info!!!
Post by grumpett on Sep 17th, 2003, 9:36pm
I am in.
let me know what to do!

Title: Re: Important Info!!!
Post by jim_bo on Sep 17th, 2003, 11:00pm
What ever I can do

Title: Re: Important Info!!!
Post by nils on Sep 18th, 2003, 1:04am
I will be happy to help.

Title: Re: Important Info!!!
Post by Koda on Sep 18th, 2003, 3:04pm
Would LOVE to participate in any survey available!
Thanks
Robin

Title: Re: Important Info!!!
Post by Ree on Sep 18th, 2003, 6:58pm
bumppppppppppppp

Title: Re: Important Info!!!
Post by Ree on Sep 18th, 2003, 7:36pm
how many times can a person bump before its illegal

Title: Re: Important Info!!!
Post by Prense on Sep 18th, 2003, 7:37pm
depends on who or what yer bumpin...   ;D

Title: Re: Important Info!!!
Post by Mastifflvr28 on Sep 19th, 2003, 1:44am
ok, cheeleader time :)

http://www.maplefallswebdesign.com/misc/pompom.gif

Mast

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

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

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 Miss Blue Balls (oopppsss!)  (I mean) Mastifflvr all the more!   ;)  heehee  (Luv ya Michelle!)

Chuck

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

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!!!!!!!!!!!!!

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

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

Title: Re: Important Info!!!
Post by tommyD on Sep 22nd, 2003, 5:43am
Who hasn't signed up for this yet?

Title: Re: Important Info!!!
Post by badfly on Sep 22nd, 2003, 5:56am
Im in !!

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

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!

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

Title: Re: Important Info!!!
Post by zanychef on Sep 25th, 2003, 5:14pm
wtf! why not i'm in!



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