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        New Message Board Archives >> 2004 Posts >> Invitation to speak in Sandefjord, Norway
        
(Message started by: Magman on Apr 27^th, 2004, 11:10am)

Title: Invitation to speak in Sandefjord, Norway
Post by Magman on Apr 27^th, 2004, 11:10am

Posted to OUCH-US and CH.COM………

Our Cluster brother, Svenn Thorn, has been invited to speak at this years Polarmed convention in Sandefjord, Norway. Polarmed is a major pharmaceutical company in Norway. The dates of the convention are August 25, 2004 through August 27, 2004 (Wed through Fri).

Here is a portion of the mail sent to Svenn [translated/paraphrased]. This relates to an article written by Svenn several years ago for a Norwegian Health magazine.

“I have now read your story, and I have to give you congratulations for getting this far despite all the pain and suffering. I/we really hope you’re in a good phase now and we are really looking forward to hear more about this [clusters] from a patients words. We will keep you informed on the progress and further program on the congress.”.

Convention attendees include approximately 200 Neurologists, Doctors and specially-invited guests. Svenn is being asked to give a 20 minute presentation [presume 15 min talk w/5 min question & answer], on CH from a sufferers perspective.

As you can imagine, speaking in front of 200+ professionals, on a topic so personal and life-changing, could be a daunting task for even the most seasoned public speakers. To this end, I want to call upon our family for assistance in preparing a presentation for Svenn. The only stipulation by the convention is that whatever is presented from the podium, must also be available in a Power Point presentation.

The convention ‘theme’ for this year includes: Respiration, Oxygen, Inhalation, Sleep and Diagnostics. Working these ‘theme’ topics into Svenn’s presentation may help in having the attendees sit up and take notice.

In the coming week(s), I will compile a post and/or email to outline what assistance is needed, and how we might pull this together. Suggestions, comments, or any information may be passed along in this thread, or sent via email to projects@kdlltd.com. I will forward any and all email to Svenn for his review.

Polarmed can be found at http://www.polarmed.no/ (hope you know Norwegian!). Thankfully, the presentation will be created and given in English. Which is a very good thing for me, since during our morning chat today, Polarmed called Svenn, and I urged him to accept this offer.

Peace and PF’s to you all,
-dan

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Redd715 on Apr 27^th, 2004, 11:19am

Now is this kewl or what???? I'm so proud of Svenn and for all the the people that have worked so hard to bring OUCH and this condition the recognition it deserves. This is another step forward to true understanding and education into this for all of us.
Another step closer to a cure. I'm rather new to understanding what CH is about as far as a diagnosis is concerned. But not new to the pain. If there is anything I can do to help please just ask. If I'm capable I certainly will do it.

Title: Re: Invitation to speak in Sandefjord, Norway
Post by OneEyeBlind on Apr 27^th, 2004, 12:11pm

Hey Svenn, that is way cool !!!!!!

Title: Re: Invitation to speak in Sandefjord, Norway
Post by floridian on Apr 27^th, 2004, 12:17pm

Way to go, guys!

Will check out your future post and help if I can.

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Kirk on Apr 27^th, 2004, 12:28pm

That is just the best opportunity. Too kewl for school.

[smiley=smokin.gif]

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Tiannia on Apr 27^th, 2004, 12:35pm

That is awesome.

I have litterally put together 100's of Power Point Presentaions. Let me know if I can help. There are so many people who are here that know much more about CH then I do, so I cant be much help on that end.

I dont believe it will be that hard to tie at least some onf the themes that where mentioned.

-Tia

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Svenn on Apr 27^th, 2004, 12:36pm

brother and sisters

What i really could use here is a BAD hit on tape.Anyone
that have something like that you let me use there

That could really be an "apitizer"before my speach

Thanx for all help

Svenn

Title: Re: Invitation to speak in Sandefjord, Norway
Post by kissmyglass on Apr 27^th, 2004, 1:15pm

Congrats Svenn! Very Cool!

If you can't get a bad hit on tape, take a scene from the movie "PI". Like the scene where the guy is in front of the mirror with a drill ready to drill a hole in his head to let the beast out. Very disturbing & will absolutly get peoples attention.

Good Luck!

Kev

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Charlie on Apr 27^th, 2004, 3:58pm

Nice going my friend and a challenge to us to keep it simple. Go to it kids.

http://www.netsync.net/users/charlies/gifs/QUILL.gif

You'll do just fine Svenn.

Charlie

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Leesa on Apr 27^th, 2004, 4:54pm

Svenn, congrats my friend. I wish I could help on the tape thing, Dave is out of cycle right now and Im not sure when his cycle will return. I must say never would be good! But with this family here Im sure we will find you a tape.
Best wishes, Leesa

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Jimi on Apr 27^th, 2004, 6:14pm

Svenn if you would like to preview your presentation to us at the convention, we would love to hear it.

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Woobie on Apr 28^th, 2004, 8:19am

Svenn...

You will do a WONDERFUL job - I just know it!!!!

Congratulations!!!!!

tina

Title: Re: Invitation to speak in Sandefjord, Norway
Post by renny on May 8^th, 2004, 7:45am

...just a little ole' bump.... :)

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Simon on May 8^th, 2004, 8:37am

This is superb Svenn - well done and good luck.

Keep us informed...

dolly

BTW have just posted similar to OUCH-UK board. Perhaps any passing Canadians, Italians, Germans and others could add to their national sites if not already there. Svenn really needs a video for impact....

Ta
S

Title: Re: Invitation to speak in Sandefjord, Norway
Post by firebrix on May 9^th, 2004, 7:37pm

We had our first ever phone call from Norway in the weekend. It was a truly amazing experience to speak to Svenn in person rather than through Messenger. We are both astounded at "our Viking's" bravery in facing this enormous challenge and wish to help him wherever we can.

He explained all about this VERY IMPORTANT opportunity he has been given to address 200 neuros and explain to them how CH affects the lives of sufferers and families and talk to them about the many problems CHers have with the medical profession's lack of understanding of the condition.

Not many neuros have seen an attack, certainly not a Kip 10. How can they understand if they have no idea of a Clusterhead's experience? Svenn's brilliant idea to SHOW them an attack on disc/tape is a certain way to get them to sit up and take notice, and if they get to see this with their own eyes, it is going to be harder for them to say "Take two asprins and call me in the morning" or whatever it is that we read causes so much anguish to those who seek their help to no avail.

I read this board regularly although I do not often post. I continually read about sufferers who have problems with neuros who "do not understand". Through Svenn's courage and bravery, we have a wonderful opportunity to change this, even if this event is in another country. We live in a global village now and it matters little where enlightenment occurs - it travels via the internet in no time at all, so let us get that tape together for him.

Happily, Mopar's ha.s are under some control at the moment, so although he would like to help Svenn, he cannot. Surely someone could help? Is there, anywhere, a tape/ disc of someone being slammed as this tape really needs to be quite shocking to make a full impact on that room full of neuros. I'm afraid that the movie "Pi" just won't do it as its connection to CH is vague at best.

I understand that it is not easy to make and supply a tape of yourself at the WORST time of your life. When you look BAD. None of us wish to look bad or allow others to see us this way. But this chance may not come again for a very long time, and Svenn may never have this opportunity again. Is there not ONE brave soul who will help him to help maybe thousands of sufferers in the future? Maybe if several tapes were made of a number of sufferers, it would be easier? I mean, if it were not just ONE person being taped but many, there would be some solidarity and "safety in numbers"?

Let us all work together on this and see what we can come up with because I know this community will not allow our Viking to attend this meeting without his family's assistance .

Happy days to you all
firebrix

Title: Re: Invitation to speak in Sandefjord, Norway
Post by Svenn on May 10^th, 2004, 2:44am

COME ON FOLKS

You has to understand this.

A taped BAD hit is something we all can use for education of peoples that still refuse to believe the kind of pain we are suffering

There is in facts a LOT of people out there that still believe that migraines is among the worst pain there is.

Or they have NEVER heard about cluster

Just so it has been said i do NOT look down of the migrainers.I KNOW their pain is real enough,no question about that.

Its just that cluster is on another level as WE know.

We have a golden chanse here to show what a cluster-HIT really is.Even in the small country called Norway.

A tape like that can be used worldwide.That we has to agree on,or what?

We all can benefit from educating our docs and other peoples

Thnx for lissening

Svenn

Title: Re: Invitation to speak in Sandefjord, Norway
Post by brain_cramps on May 10^th, 2004, 2:26pm

Svenn

I'd gladly be taped while getting hit. Only 2 problems:

1) I'm not in cycle and I'm not about to start hoping for one just so I can be taped.

2) After censoring, it would either be about 3 seconds long OR a 2-hour long BLEEP.

Anyone else? This could be ~~your chance at stardom~~ your chance to help educate neurologists and GPs everwhere!

Grant