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New Message Board Archives >> Jul-Sep 2003 >> Response from World Headache alliance to OUCH
(Message started by: don on Sep 25th, 2003, 8:29am)

Title: Response from World Headache alliance to OUCH
Post by don on Sep 25th, 2003, 8:29am
Dear Don,

Thanks for writing regarding membership in World Headache Alliance.  I'm sorry you have been having trouble.  Our technical staff are attempting to discover and correct the problem but it is great to know that the discussion board offers a positive alternative to facilitate communication.

I am so glad you wrote.  I actually had it on my list of things to do.  Dr. Fred Sheftell, WHA's chairman, and a number of our member representatives were present at the Cluster Headache programme in Rome and were inspired, to say the least!

I had corresponded with Bennie Taylor over the last couple of years and we spoke about OUCH considering membership in WHA.  Unfortunately at that time, Bennie reported that your board was not interested but would consider it possibly in the future.

I have attached a membership application form.  If you have any questions, please do not hesitate to contact me. You can reach me directly at karyshannon@sympatico.ca or by phone at +1 905 333-8185; fax +1 905 637-5254.

If you have a moment, I'd also be happy to share with you news of Lifting The Burden, the global campaign to reduce the burden of headache worldwide.  Lifting The Burden is a joint enterprise of International Headache Society, European Headache Society and WHA in collaboration with the World Health Organization.  You can see some of the preliminary information at www.l-t-b.org.  

I hope you and OUCH organizations around the world will find value in becoming an integral part of WHA.  


With best wishes,

Kary


Kary Shannon
Chief Operating Officer
WORLD HEADACHE ALLIANCE
3288 Old Coach Road
Burlington ON Canada  L7N 3P7
Tel: +1 905 333-8185
Fax: +1 905 637-5254
Email: karyshannon@w-h-a.org
Website: www.w-h-a.org

Title: Re: Response from World Headache alliance to OUCH
Post by CC on Sep 25th, 2003, 8:34am
holy shit batman, thats only 25 minutes up the road from me!!!

i best be getting in contact with that person! thank you very much for that info don!!!

Title: Re: Response from World Headache alliance to OUCH
Post by BobG on Sep 25th, 2003, 8:35am
Dang  :o

This gets bigger and better every day.

Congratulations to all who have worked so hard for OUCH.

Thank you  ;D

Title: Re: Response from World Headache alliance to OUCH
Post by don on Sep 25th, 2003, 8:37am
The potential for this is huge.

The UK has Goadsby.

I'll go out on a limb here and say we may have Dr. Sheftell.

With Dr. Sheftell comes, Dr. Rappaport, Dr. Bigel and the staff of the New England Headache Center and Research Institute.

Title: Re: Response from World Headache alliance to OUCH
Post by catlind on Sep 25th, 2003, 8:44am
And everyone thought that the board and officers of OUCH didn't do any work ;)

The organization really is moving into the big leagues.  It's time we get our ducks in a row and show them we are an intelligent knowledgeable group of people who have the drive and determination to make CH a thing of the past.

All Aboard!!!!!!!!!!!!!!!!

Cat

Title: Re: Response from World Headache alliance to OUCH
Post by JDH on Sep 25th, 2003, 8:48am

on 09/25/03 at 08:44:04, catlind wrote:
All Aboard!!!!!!!!!!!!!!!!

Cat


Punch my ticket, this is a ride I don't wanna miss.

Jim

Title: Re: Response from World Headache alliance to OUCH
Post by don on Sep 25th, 2003, 8:51am
I had a discussion with Dr. Sheftell in Rome.

His enthusiasm and respect for OUCH was obvious.

He was quick to point out that it was his Doctor that attended our convention.

Dr. Sheftell has been watching us!

Title: Re: Response from World Headache alliance to OUCH
Post by CC on Sep 25th, 2003, 8:59am
Don,

If he happens to mention that he wants to meet with somebody for some tests or even just to ask some questions, i will volunteer for sure, like i said he is just a stones throw away from me!!

Title: Re: Response from World Headache alliance to OUCH
Post by Mastifflvr28 on Sep 25th, 2003, 9:10am
Thanks for the report Don!!

Whooo hoooo, I signed up for their mailing list :)

Mast

Title: Re: Response from World Headache alliance to OUCH
Post by ozzman on Sep 25th, 2003, 9:38am
This is excellent Don. Great work, we are moving into uncharted territory, but good territory nonetheless.

Awareness by Physicians and Neurologists (at the local level) seems to be the major roadblock for treatment. Who is the governing body for Neurologists (much like AMA). is it IHS?
My thought here is that some governing body needs to communicate (force feed?) its community what the symptoms, treatments and guidelines are. I do understand that the IHS might be that body and that you can't make Neuros to read and apply the information, but I think it is inexcusable for Neurologists to still confuse CH with migraines, or to call them Cluster-Migraines or even worse to under-medicate their patients!!

I do realize that this were we individuals, and local chapters need to do the legwork, but in most cases, our "word" will not be sufficient for most Docs. They may say like my Neuro (Selected best Neuro in New Jersey by New Jersey Mag), when I presented him the report from the convention, well that's nice (without opening) adding "I'll just put it in your medical file.." !!!!


Where I'm going with this rambling is basically, association with a leading Neuro and/or organizations (plural) is possibly the best step we can take now to gain credibility, locally and nationally.

I ran out of brain ink, so I'll just leave it at that.

Ozzy

Title: Re: Response from World Headache alliance to OUCH
Post by Cerberus on Sep 25th, 2003, 10:30am
Round trip ticket for me please.....woohooo!

Ramon

Title: Re: Response from World Headache alliance to OUCH
Post by suzy617 on Sep 25th, 2003, 10:47am
Awesome  news Don!

Suzy

Title: Re: Response from World Headache alliance to OUCH
Post by OneEyeBlind on Sep 25th, 2003, 10:48am
Rocking !!!!!!!!!!

Title: Re: Response from World Headache alliance to OUCH
Post by Elaine on Sep 25th, 2003, 11:36am
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)




HOPE IS O.U.C.H.

Title: Re: Response from World Headache alliance to OUCH
Post by forgetfulnot on Sep 25th, 2003, 11:54am
Way to go Don, so much better than Dr. Phill or Oprah.

;D

Lee

Title: Re: Response from World Headache alliance to OUCH
Post by BarbaraD on Sep 25th, 2003, 12:12pm
So has the BOD voted to join his organization yet?

We need to join ALL the headache organizations to get OUCH known in the headache community so we can get OUR word out. Once we're members of these groups we can have OUR say.

Great work Don..... You're a good man!!!

Hugs BD

Title: Re: Response from World Headache alliance to OUCH
Post by don on Sep 25th, 2003, 12:26pm
The discussion is open with the BoD if I can get them to respond we'll have an answer.

Title: Re: Response from World Headache alliance to OUCH
Post by Hirvimaki on Sep 25th, 2003, 12:41pm
Yeah, Don!  Awesome, wonderful news.  Let me know if there is anything I can do to help (as per our precious conversations...)

PB

Title: Re: Response from World Headache alliance to OUCH
Post by Hirvimaki on Sep 25th, 2003, 12:42pm
Er, previous, not precious... LMAO!

Title: Re: Response from World Headache alliance to OUCH
Post by BarbaraD on Sep 25th, 2003, 12:48pm
Geezzz! so vote already.... What's to discuss --- Let's join.....

Hugs BD

Title: Re: Response from World Headache alliance to OUCH
Post by don on Sep 25th, 2003, 1:00pm
We can not vote when members of the BoD do not respond. We need a quorum.(SP?)

Title: Re: Response from World Headache alliance to OUCH
Post by BarbaraD on Sep 25th, 2003, 1:04pm
Calling All BOD members --- WE NEED A 'YES' VOTE HERE ASAP......

BD

Title: Re: Response from World Headache alliance to OUCH
Post by jonny on Sep 25th, 2003, 2:01pm

on 09/25/03 at 12:41:29, Hirvimaki wrote:
Yeah, Don!  if there is anything I can do to help (as per our precious conversations...)


BWWWAAAA!!!! ;D

............................jonny


Title: Re: Response from World Headache alliance to OUCH
Post by Pinkfloyd on Sep 25th, 2003, 3:17pm

on 09/25/03 at 08:29:33, don wrote:
Dear Don,

I had corresponded with Bennie Taylor over the last couple of years and we spoke about OUCH considering membership in WHA.  Unfortunately at that time, Bennie reported that your board was not interested but would consider it possibly in the future.


First of all, I want to congradulate the BOD and those individuals for the recent strides being made.

I would like to ask a question though. If the WHA has been trying to get OUCH to join for a couple years, why is everyone so happy as if OUCH has made some great breakthrough? Why didn't they join two years ago?
Could have "had" Dr. Sheftell a couple years ago?

What are we celebrating? The fact that you finally decided to join?

I'm not trying to knock anyone or take anything away from what is now happening and the work that is being done. I'm trying to find out if there has been some big shift in the direction of OUCH....


PF

Title: Re: Response from World Headache alliance to OUCH
Post by don on Sep 25th, 2003, 3:29pm
I believe it's just a revival of enthusiasm.

We haven't joined yet. The vote hasn't taken place.

Has there been a shift in the direction of OUCH?

I think being invited to the "Cluster Club" in Rome sort of answers that one. We went.

Title: Re: Response from World Headache alliance to OUCH
Post by BarbaraD on Sep 25th, 2003, 4:06pm
If the "membership" doesn't tell the BOD what they want, then how will the BOD know what they want?

So don't let's put all this on the BOD.  MEMBERS - now it's your time to speak out. Let your Board members know how you FEEL.

Go to the OUCH Business BOard and SEE what's going on - Let your opinions count. The BOD make the final decisions on OUCH business, but we elect them to do what's best for US.

Don't think your opinion will count? Why not state it and see? As I said, how will our BOD know what WE want unless WE tell them?

For what it's worth --- I think we should join IHS, WHA, ACHE and NHF - all --- get the OUCH name out to ALL the headache associations and maybe then we can get some mention in their publications and get something done for CH.

BD

Title: Re: Response from World Headache alliance to OUCH
Post by Bob P on Sep 25th, 2003, 5:22pm

Quote:
I had corresponded with Bennie Taylor over the last couple of years and we spoke about OUCH considering membership in WHA.  Unfortunately at that time, Bennie reported that your board was not interested but would consider it possibly in the future.  


Floyd,
BennieSue Taylor never spoke for OUCH nor the BoD.  In fact, she bears a large grudge against OUCH.  Last time I looked, she had links to all of the headche sites except OUCH on her CHhelp site.

Title: Re: Response from World Headache alliance to OUCH
Post by Prense on Sep 25th, 2003, 5:40pm
Awesome news Don...thanks!   ;D

Title: Re: Response from World Headache alliance to OUCH
Post by Mark C on Sep 25th, 2003, 5:46pm
I smell progress!....And it smells good!

Title: Re: Response from World Headache alliance to OUCH
Post by BarbaraD on Sep 25th, 2003, 5:46pm
Why don't we forget what's happened in the "past" and go on from Today?

Sometimes we lose site of our OUCH goals - to find a cause and CURE for CH.  We tend to get off on the alligators and forget our purpose was to drain the swamp....

Right now the question is -- Do we or Don't we join other associations and which ones?

BD


Title: Re: Response from World Headache alliance to OUCH
Post by Elaine on Sep 25th, 2003, 6:50pm
Flash asked:

I would like to ask a question though. If the WHA has been trying to get OUCH to join for a couple years, why is everyone so happy as if OUCH has made some great breakthrough? Why didn't they join two years ago?
Could have "had" Dr. Sheftell a couple years ago?


Bob told the reason he thinks it is! If anyone wants to move forward I am sure Bob P would.

If you all want answers from the BOD and officers, when they answer don't tell them to hush! They are telling you why! Some of the answers are from the past, Bad or Good.

Title: Go to the right Place
Post by Mr.Happy on Sep 25th, 2003, 7:02pm
I like this place. I really do. I love it here.

BUT, this is CH.com

Make yourself _herd_ at CH.org

I fish and I vote,
RJ

Title: Re: Response from World Headache alliance to OUCH
Post by Pinkfloyd on Sep 25th, 2003, 11:04pm

on 09/25/03 at 18:50:52, Elaine wrote:
Flash asked:

I would like to ask a question though. If the WHA has been trying to get OUCH to join for a couple years, why is everyone so happy as if OUCH has made some great breakthrough? Why didn't they join two years ago?
Could have "had" Dr. Sheftell a couple years ago?


Bob told the reason he thinks it is! If anyone wants to move forward I am sure Bob P would.

If you all want answers from the BOD and officers, when they answer don't tell them to hush! They are telling you why! Some of the answers are from the past, Bad or Good.


Elaine,
Flash didn't ask the question.....I, BobW (PF), asked.
I appreciated the answers from both Don and Bob P.

I asked, I was answered, I am happy. I agree about getting answers, past or present may they be. If you can't openly discuss the past, you'll never improve the future.

~peace....out~
PF

Title: Re: Response from World Headache alliance to OUCH
Post by nancyc on Sep 25th, 2003, 11:32pm
Don , I am excited..I agree we need to join every organization we can ....We are all after the same thing, rite? TO find a cure for our pain.....wheither it be clusters, migraines or whatever....So, let's do IT! smiles,nancyc

Title: Re: Response from World Headache alliance to OUCH
Post by Dave_Emond on Sep 25th, 2003, 11:50pm
As a member of the OUCH BoD, I would like to add a comment to this thread.
Although this appears to be an invitation one couldn't possibly turn down, there are details missing from this issue. Important ones at that. It is not a matter of nonresponse by the BoD or Officers of OUCH.
You elected us into these positions to serve you in the best interest of OUCH and it's service to members.
We want to do that, but in order to do so, we have to consider many aspects that are in the "fine print" when something appears to look like a fantastic opportunity.
We are not sitting back on this, but we are looking into the details not seen here. I have made a request to the Officers and BoD that we take this and other issues up in an organized format. Review all aspects, and move on a vote. The enthusiam is fantastic, but it is our duty to you to know exactly what we are doing before we jump into something. Which ever way we go, I can assure you our goal is to protect OUCH and serve all members to the best of our ability. Therefore, we have to take these matters seriously, can't afford to make a mistake that may not be in your best interest. I am not implying that we are not interested, we are listening. We just owe it to you to do the background work that is not seen here. I hope you understand we are not trying to impeed CH awareness, we are trying to make sure that awareness is focused in the right direction.
We will have a vote on this in the coming week, which ever way we decide, we will provide the reasons for our decision.
Again, we work for YOU, and will make every effort to see that your interests are being met.
Thanks,
Dave Emond

Title: Re: Response from World Headache alliance to OUCH
Post by Charlie on Sep 26th, 2003, 1:10am
Thanks Don & CO.

Anything that helps OUCH and the like into a “red shift” is good thing. Maybe this will force us to expand outward in more than one direction. While our little circle is fun, it’s not in a position to do much.  It may be messy at first but it’s time to join in the fun.

Ave has pointed this out before and it’s something to work on.

Charlie

Title: Re: Response from World Headache alliance to OUCH
Post by Elaine on Sep 26th, 2003, 5:24am
Sorry about  that PF I had Flash on my mind !

Title: Re: Response from World Headache alliance to OUCH
Post by Pinkfloyd on Sep 26th, 2003, 7:11am

on 09/26/03 at 05:24:34, Elaine wrote:
Sorry about  that PF I had Flash on my mind !


Thats OK Elaine, I hope they were good thoughts. ;-)

PF

Title: Re: Response from World Headache alliance to OUCH
Post by Bob P on Sep 26th, 2003, 9:22am
I enjoyed yesterdays wide open discussion on the OUCH Business Board.  Reminded me of the California gubenatorial debate the previous evening.

Title: Re: Response from World Headache alliance to OUCH
Post by don on Sep 26th, 2003, 3:02pm
I wanna be Arnold.

Signing off for the weekend ...........but........................

I"LL BE BACK !

Title: Re: Response from World Headache alliance to OUCH
Post by Donna on Sep 26th, 2003, 9:07pm
As to the questions re: being exposed to Neurologists, etc., by belonging to these organizations, we are sure to be noticed by others.

I'm very happy the BoD chose to approve this issue.

I am also very happy that they are encouraging us all to voice our opinions as we should have been doing for a long time.  It is our duty to share our thoughts with our governing body.....not just complain after the fact if they had to make a decision that we are not completely happy with.  



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