2nd Annual CCSVI Symposium in NYC July 15-17

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

Would you be interested in attending a patient day without cost?

Total votes : 47

Postby KikiT » Tue Jul 12, 2011 12:40 pm

I walk as though I have had a few drinks anyway...what's one more!!!
Count me in.

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Postby pklittle » Tue Jul 12, 2011 12:49 pm

bestadmom wrote:Broadway 49 is the hotel bar. Basserie is the restaurant but it has fixed booths. The bar looks like it's the type of place we should go.

It will be quite the scene when upwards of 100 pwMS and their caregivers arrive. There are many more facebookers coming on than tims-ers.

- Where do people generally hang out on FB?

- So around 100+ have signed up for patient's day? That's awesome.
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Postby bestadmom » Tue Jul 12, 2011 1:09 pm

There are several pages on fb and Joan's, CCSVI in Multiple Sclerosis is the most informative and very active.

There are about 40 of us from the ny tri-state area that have a private group to chat, but if you are on facebook, start friending us. You'll meet lots of those people on Friday so you'll know everyone's (real) names.
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Best wishes for the conference

Postby MarkW » Tue Jul 12, 2011 4:05 pm

I hope Dr S, all doctors attending and MSers and carers have a wonderful time sharing and learning more about CCSVI syndrome and its treatment. I regret not being able to attend but am on the wrong side of America at this time. Maybe next year.

I know there will be lots of questions from pwMS. Please don't give Dr S too hard a time with questions. At this time its enough to know that de-stenosis works for most pwMS. How and why could take years of research..................

Have fun as well.

Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
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Postby HappyPoet » Tue Jul 12, 2011 11:52 pm

Broadway 49 sounds terrifc! Thank you, Michelle.

KikiT, you are counted!

Pam+husband and Deb+husband, it will be great to meet you all in person!

Mark, sorry you can't attend... yes, maybe next year. Thanks for your good wishes.

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Postby Cece » Wed Jul 13, 2011 7:49 am

Count me in too. :)
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Postby HappyPoet » Wed Jul 13, 2011 5:02 pm

Cece, you are hereby counted!

DrS, you and your guests are, of course, welcome, too!

Come one, come all!
Stop by and say hello!
The more the merrier!

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Postby pklittle » Wed Jul 13, 2011 5:14 pm

We're gonna have a partay! :wink:
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Postby munchkin » Wed Jul 13, 2011 5:34 pm

Everyone have a great time.
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Postby cheerleader » Thu Jul 14, 2011 2:37 pm

From Christine regarding the entrance of the Crowne Plaza for tomorrow's Patient Education Day--

"The valet and entrance is NOT on Broadway but is on 48th between Broadway and 8th on the left by the big red parking sign. Hopefully this will help some people."

Thanks to Christine for this clarification.
Have fun, everyone!!!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Johnson » Thu Jul 14, 2011 4:05 pm

Man, I wish that I could be there.

Have fun for me!
My name is not really Johnson. MSed up since 1993
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Postby Cece » Thu Jul 14, 2011 5:12 pm

8:30 a.m. - 10:00 a.m. “Coffee Time” (sign in and meet the speakers)
10:00 a.m. - 4:00 p.m. Program

They've fixed the start time on the website.

Anyone out there who is local and thinking of coming, please do! (Or if you're not local, but can drive far & fast....)
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Postby ErikaSlovakia » Fri Jul 15, 2011 3:43 am

Johnson wrote:Man, I wish that I could be there.

Have fun for me!

Me as well! Saying hi to everybody :)
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby prairiegirl » Fri Jul 15, 2011 8:18 am

^Ditto! Really looking forward to hearing reports from the symposium!
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Postby Needled » Fri Jul 15, 2011 10:10 am

OK, so who's going to be the first one to post about what's going on?
We need a fix here. Somebody help us and get typing. I guess you're all busy learning so much and having a great time meeting everyone...
Soooo wish I was there.
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