CCSVI Awareness

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

CCSVI Awareness

Postby Vonna » Sat Apr 10, 2010 12:43 am

Hello everyone,

Since February 27th, when I first posted a message on This is MS about ideas for CCSVI awareness, SOOO much has happened. I never dreamed just where that message would lead us! It turned out, that some very creative; awareness savvy people joined the conversation. They suggested wearing CCSVI Awareness t-shirts to MS society events and passing out business cards and flyers. Right away, people joined in and began making great suggestions, sending info, and helping in any way they knew how.

Within about two weeks, we had a t-shirt design that had been “through the fire”. It had been designed and re-designed about ten different times because of all the wonderful ideas and the constructive criticism. It was truly a group effort! The business cards soon followed, then the flyer.
Now, we have a singular message that we were all aiming for.

Just in the short time that the shirts have been for sale online, some great things have happened. Jill (or you may know her as Jillthepill) had the opportunity to get her picture taken with Dr. Mark Haacke as they wore the CCSVI Awareness t-shirts. She sent me a text that day to say that when she went to breakfast at the hotel, all twelve of the other guests ended up at her table, asking her questions because of her shirt! Later that day she went out for lunch and the lady that took her order asked her about her shirt. It turned out that the lady had MS! Jill joked that we needed to send out warnings to go with the shirts, because you might bet mobbed!

A group of us participated in the very first MS society walk where we proudly wore our CCSVI awareness t-shirts and passed out business cards and literature. Just a few days ago, Mark from YouTube (irishbear76) was on the radio and talked about the shirts and our purpose and goals for wearing them. Thank you Mark! Then just today, there was a demonstration in Calgary, Canada where the shirts were worn. It was great to see the back of one of the shirts as the opening of the media coverage! Tomorrow, another group will be wearing the shirts at a MS walk in Las Vegas, Nevada.

Very soon, we will be announcing our very first donation to Dr. Mark Haacke and the MRI Institute.

People are learning about the shirts, and things are catching on. However, the MS walks are happening every weekend, and there are many opportunities that are passing us by even tomorrow.

A list of the walks, dates and locations are here:
http://ccsviworldwidevictory.com/USA.aspx

or here:
http://ccsviworldwidevictory.com/Canada.aspx

If you can help, please contact the Education Coordinator for the walk nearest you. If there is no Coordinator listed, please consider becoming the Coordinator. Also, we need CCSVI Awareness Captains for each state and province. These opportunities will be in the past before long,
so

NOW IS THE TIME.

Also, many people have expressed interest in a demonstration in the US as Canada is planning. I would very much like to help with this, and we could use the same structure already in place from the walks. Those that are the State/Provence Captains and Education Coordinators for the walks can be asked if they are interested in heading something up in their location. So, we do have a good start on this. The Canada event is May 5th. I need to know if those in the US think we have enough time to get things together by then, or if we need to choose a different date. I think we would make a bigger statement if we could do something the same day as Canada, if possible. I am also looking for someone to be the US leader of this project. I have my hands full already, and there is no way I could possibly give this project the time it needs. I would love to post information, advertise, etc., I just can’t be the one to head it up. I know that this would distract me too much from the other projects that need so much time and attention right now.

I would love it if someone or could volunteer to help with the MS walks in the US as well. This means organizing and getting others involved in different locations, using the internet. As Avis Favaro recently said, “One thing is clear, MS patients are VERY intelligent, and VERY internet savvy". What’s so nice about this is we can do much of the work in the comfort of our own homes, on our own time, taking naps in between as needed! : )

I also have structure in place for other continents and countries. I am doing all I can to make this site beneficial for everyone around the globe. You are welcome to become involved no matter where you are from. I will just need your help!

This link is to a page with several other links that can help with CCSVI awareness:
http://ccsviworldwidevictory.com/EducatorsToolbox.aspx

There are free digital items for CCSVI awareness, a one page summary or flyer that can be posted on the windows of businesses, a two page (front and back) letter from Ashton Embry that explains CCSVI to those new to the concept, the store where you can purchase t-shirts, business cards, and car magnets, and more. If you have a suggestion for something that needs to be added to the Educators Toolbox, let me know.

I look forward to hearing from you!
Lavonna
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Postby Rose2 » Mon Apr 12, 2010 2:23 pm

This is cool and I am excited. I have never signed on to Facebook before, but I did so I could get to the CCSVI site.
yada yada, I ended up at a high school classmates reunion website.
So I did the for free thing. Ended up chatting with an old friend who now lives and works in Russia. I explained a little of CCSVI and he is very interested.
So, now I am thinking this is a pretty cool way to get the word out too.
I now have contacts all over the globe who know me and will now read about CCSVI and my MS.
Has anyone else done this with their high school contacts? Just wondering. Rose
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Postby Vonna » Mon Apr 12, 2010 6:06 pm

Hi Rose,
I have found that is is the BEST way to get the word out. I have made a group for each state so that we can go local with out efforts.

To find your group, visit here:
http://ccsviworldwidevictory.com/FacebookGroups.aspx
and look to the right for your state.

Am I correct that you are from California? If so, you can go straight to this group here:
http://www.facebook.com/group.php?gid=1 ... 565&ref=ts
There is already a group of passionate people working to get the word out about CCSVI there.
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Postby Rose2 » Mon Apr 12, 2010 8:08 pm

tu vonna.
i will study this.
tx, Rose
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