I 'came out' at local NMSS dinner mtg tonite

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby cheerleader » Tue Apr 27, 2010 7:56 pm

Rose2 wrote:I HOPE I can help.
I can go as a Show and Tell display to Conferences and Symposiums all over the world! I am available!!
Sincerely, Rose ;)


Well, I think the CCSVI Alliance will probably be happy to take you up on the offer, Rose!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Tue Apr 27, 2010 8:33 pm

Rose,

I understand how you feel. If I did not have this full time job that I need badly, I would be finding a way to travel and talk CCSVI. I live in a very small town and it's like GREEK to those who don't know what it is. They just look at me like I am nuts.

I don't even know how a person would start helping. I would help any way I can if needed with CCSVI education.

Cat
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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mshusband » Wed Apr 28, 2010 5:32 am

You know ... Dr. Burt at Northwestern got Edwin McClure on the Today show ...

Why don't we TRY get a bunch of liberated people on a national TV show ... to talk about the results. I'd bet Dr. Sclafani, Dr. Dake, maybe a few others ... and talk about the Kuwait results as well ...

We need to start PUSHING BACK like neuros and drug companies are pushing on us.
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Postby Rose2 » Wed Apr 28, 2010 8:42 am

Thank you all.
I feel like that old Saturday Nite Live affirmation skit. I forget the name of the character but it used to put me on the floor.

Cheer~ My bags are packed. I am ready to roll.

Catfreak~ I don't think it matters if your town is small or a large city. CCSVI IS Greek to most people AND the medical community, thus our mission. Correct?

mshusband~ I did not know that CCSVI was presented on the Today Show. I was wondering if it would since, I think, Meredith Viera's husband has MS. How long ago? I will try to find archives. Was it a good presentation. Not familiar with those MDs. will look them up.
Thanks Again.
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Postby mshusband » Wed Apr 28, 2010 9:32 am

Sorry ... Dr. Burt and Northwestern are big in the Stem Cells ... not CCSVI.

Didn't mean to confuse anyone. There has been no CCSVI major media attention on TV in the US - YET.



I was saying WE SHOULD TRY to get some of the doctors (especially the ones from Kuwait that are testing everyone) and Dr. Sclafani, and Dr. Dake, etc on the Today show, or some other national TV show ... that'll spread the word quickly.
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Postby Rose2 » Wed Apr 28, 2010 9:35 am

Agreed.
I will see what headway I can make to leave a message for Meredith Viera @ Today show.
They seem so approachable on TV, but who knows?
thanks! Rose ;)
ps. if someone else has already tried this please let me know how/what/where/when? thanks
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Meridith Viera

Postby FlashHack » Thu Apr 29, 2010 12:37 pm

You know, of course, Meridith Vieira's husband, Richard Cohen, has MS. He wrote a book about it, Blindsided.
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Postby bestadmom » Thu Apr 29, 2010 12:42 pm

I emailed him, his editor and publicist, as well as Meredith Viera several months ago and got no reply.
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