This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

I asked the facebook group "CCSVI at UBC MS clinic" if they would like a meeting to discuss CCSVI and organize local action. As you know, many people are organizing letter campaigns, holding rallies, and communicating with the media. We chose this Friday, April 9, at 7pm PST to discuss these and other options.

We are delighted that Dr. Mark Godley accepted our invitation to attend. Mark is freshly back from meeting with Dr. Zamboni and observing his research labs in Ferrara and meeting with doctors performing CCSVI treatments in Poland. Mark will update us on the work of Dr. Zamboni, the new centre for vascular studies, and the work being performed in Poland. He also is collecting patient reports post-treatment and working with Dr. Haacke.

One of our members generously donated her home for this gathering, so to expand capacity of how many can attend, we will be streaming the event live on the Internet. We are nearing capacity for how many can attend in person. If you RSVP'd and now cannot attend, let me know so another spot opens up for someone else! If you haven't RSVP'd and want to come, PM me and I'll see what I can do (or through the facebook link below). If you want to view the webcast, check back here Friday evening before 7pm PST for a link to the broadcast.

This is grassroots (acting locally!!), so please don't compare our webcast with the MS societies' broadcasts. My son just bought me my first webcam today...

~Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

Definitely interested in webcast! Thank you so very much for organizing this

That will be terrific to watch Sandra. Dr G is working so hard for us
he really deserves a big thankyou and big hug.

I'm interested in viewing. This post assures me I receive an email whenever a post to this thread is made.

That is wonderful, Sandra. Will it be in Victoria?

I agree about Dr. Godley. He and Dr. Meakin (at FCSC), are a couple of the very few doctors in Vancouver that I have respect for - sadly. They, and their staff, are working very hard on our behalf. I have received nothing but kindness and understanding from them. Dr. Godley gave me his cell #, and I later realized that I called him twice while he was in Europe. It would have been about 2:00 AM for him, but he never missed a beat.

I will watch here for details on the webcast. Thank you for doing this. And please, give the good Doctor a hug from me.

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My name is not really Johnson. MSed up since 1993

This is sounding very exciting, and we are definitely interested in the webcast. Do you know if False Creek is actively pursuing the ability to provide the Liberation Procedure?

Good thinking larmo -- if people reply in this thread, they will get notices about updates, including the link to the broadcast.

Yes, Dr. Godley is investigating treatments being done in Italy and Poland. He has put on the record he wants treatment available locally and in Canada's public system. He returns to Poland next week, which is why we needed to hold the meeting quickly. I think his dedication for finding out exactly what is being done around the world is commendable. I don't know of any other facility that has done or is currently performing treatments that has done the same preparation.

We will do our best with the webcast, but please understand this is subject to technical difficulty! We will be using UStream, which if you haven't used it before requires you to set up a user ID and password. I will try to get that link up long before Friday evening so no one has a delay logging in. There's a real time chat utility with the webstreaming, so you'll be able to chat amongst yourselves and ask questions to those attending in person. Should be cool if it works as planned!

*We are nearing capacity for how many can attend in person. If you RSVP'd and now cannot attend, let me know so another spot opens up for someone else! If you haven't RSVP'd and want to come, PM me and I'll see what I can do.*

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

I would like to attend in person but the space must be wheelchair accessible.

Thanks so much!! Will be on the computer for this meeting!!

-VM-

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

emess2,

Absolutely! Bev's home is fully accessible, although you may have to scoot along from around the corner because parking is restricted in the cul-de-sac. But the terrain is flat (it's Ladner), so it should be easy.

I will confirm details for our other location, but it's an apartment's common meeting room, so I i,magine it has elevators and such. But if we have to go there instead of Bev's because of numbers, I will make sure it is fully accessible.

For everyone else -- We are nearing capacity for how many can attend in person. If you RSVP'd and now cannot attend, let me know so another spot opens up for someone else! If you haven't RSVP'd and want to come, PM me and I'll see what I can do.

Cheers,

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

What an angel you are to do all this !! I can't wait to see this web broadcast. !!

ozarkcanoer

YEAH!!!!!!!!!!!!!!!!!!!!
i'll be waiting for your info...

Johnson, just to clarify -- the meeting will be in the greater Vancouver area (either Surrey or Delta). The webcast should be accessible by everyone.

I will post the link on the CCSVI at UBC Facebook page and here well before 7PM Pacific time on Friday. We are nearing capacity for how many can attend in person. If you RSVP'd and now cannot attend, let me know so another spot opens up for someone else! If you haven't RSVP'd and want to come, PM me and I'll see what I can do.Thanks!

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

I edited my previous posts to reflect that we cannot accept any more "in person" attendees for our Vancouver CCSVI meeting. A member's home is going to be filled to the brim as it is, what with several of us arriving with wheels...

So, please check back to this thread (or CCSVI at UBC Facebook page) tomorrow before 7PM Pacific for a link to the webcast. We will have Dr. Mark Godley present his impressions after touring Dr. Zamboni's facilities in Italy and meeting with Dr. Simka and other doctors doing treatments in Poland. Dr. Godley will, I hope, also update us on the progress toward getting treatment done in Canada.

I'm leaving now to go buy a net book to broadcast this event (already bought a webcam) ~ wish me luck!

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

I am having a hard time tracking down a few of my positive RSVP's to attend in person. If you said you would like to come to the meeting and presentation with Dr. Godley, please PM me here ASAP. I don't want to publish a member's address publicly.

Thanks,

Sandra

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National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />