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PostPosted: Fri Mar 12, 2010 11:49 am 
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Location: LeftCoast Canada
Not sure this will be worth your time but thought I should post. My first question to Yves will be why only $100K is ear-marked for CCSVI research and $62million is collected annually? Am I missing something?

The Multiple Sclerosis Society of Canada will be holding a webcast for the general public and the media on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and MS.

Date: Wednesday, April 7, 2010
Time: 1:00pm - 3:00pm ET

Speakers: Yves Savoie, President & CEO, MS Society
Dr. Jock Murray, Founding Director Dalhousie MS Clinic
Karen Torrie-Racine, person with MS

http://www.mssociety.ca/en/research/ccsviWebcast.htm


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PostPosted: Fri Mar 12, 2010 12:34 pm 
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Location: St. Louis, Missouri
Yet another good reason not to donate to MS societies and to donate directly to CCSVI research. That is what I am doing this year. There is too much overhead with the NMSS.

ozarkcanoer


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PostPosted: Fri Mar 12, 2010 12:44 pm 
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Location: southern California
Here is the letter I sent to Jock Murray and the endMS campaign in December of 2008....

Quote:
Dear Dr. Murray-

I am not a doctor, I am merely the loving wife of someone with MS. I have read many of your papers, and several chapters of your book on the history of MS. I am very thankful for your continued interest in MS, and your willingness to consider many factors in finding its cause. This is why I write to you today...

I would like to refer you to Dr. Paulo Zamboni's (University of Ferrara, Italy) ground-breaking work on venous insufficiency in MS. This study is the first to use doppler ultrasound to follow the blood circulation in the jugular and azygous veins in MS patients. All of the 65 MS patients studied had chronic venous reflux due to stenoses in their outflowing veins. None of the 230 controls had these stenoses. I believe the endMS campaign launching in Canada might benefit from trying to replicate Zamboni's findings.

Here is Dr. Zamboni's paper, published this month-

http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

Thank you for your consideration. I am hoping some of the Canadian endMS research money might be allocated to venous insufficiency. I wish you a blessed New Year. May 2009 be the year we endMS!

Joan Beal


wonder if he ever read it?
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Fri Mar 12, 2010 2:12 pm 
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Cheerleader,

Dr. Murray can't say you didn't give him a heads up, lol.

Maybe you should send the letter again with a post-it attached. With something like, I'm sure you are now very aware of CCSVI and Dr. Zamboni; see what a mere and loving wife of someone with MS can get started in less than a year and a half?

Respectfully,

Lora :lol:

Too bad he missed the first boat that left the dock.


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