We need your input on a very important decision

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

Postby Johnson » Sat Mar 06, 2010 5:33 pm

You were right that things be anatomically correct, so I changed it.

Image


This was my thought for the back.

Image
My name is not really Johnson. MSed up since 1993
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Postby Vonna » Sat Mar 06, 2010 7:30 pm

Hi Katie,
Please try just emailing me at this address, rather than clicking the link. Hope this helps, if not, let me know! Want to work this out!

Johnson, I like this one even better! Very nice. I have actually been talking to bohemianbill about your design. He says young people are more likely to go for your design. For me, I see it as a great poster to explain CCSVI. I wouldn't be crazy about wearing such a picture on my shirt. I guess part of is is because I am a lady, and this is kinda gross. It's cool, informative, but gross at the same time. I see people having to really study this picture to get it. Most polite people won't do this, they just glance and try to catch it. A couple other things I have discussed with several people is that although this is all about CCSVI, and not MS, in order to get the attention of those with MS, we have to relate to them. We have to let them know we are trying to say something to them. Otherwise, CCSVI means absolutely nothing to them. I guess that's why I lean toward it being a poster or something, so you could give explanation how it related to MS patients. One other thing, this as a shirt would cost much more because all the colors. All that said, I like the concept very much! And, I am only one person. As I had said to bohemianbill, I think the design is great, and we should pursue it is some way, but my thinking is, lets concentrate on getting the minimum order for the T-Shirts first. As always, feel free to disagree!

Vonna
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Postby Johnson » Sun Mar 07, 2010 12:26 am

No worries Vonna, and thanks once again for your comments. I am not hugely invested in these images, I really enjoyed the distraction.

Gross? My wife thinks it is "cool" - in a most unlady-like way... Laugh. Most of my paintings are kind of weird too.

Something that I have been "pushing" since learning of CCSVI, is relating to it as "MS/CCSVI" - feeling that it would be helpful to associate the two acronyms (and terms) in peoples' minds. That is a big part of the wording on the "back" of my idea. Ultimately, it is about spreading awareness, and having conversations. Whatever gets us there can only be good.

Dress well, and talk a lot - my new credo.
My name is not really Johnson. MSed up since 1993
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Postby Vonna » Sun Mar 07, 2010 12:58 am

Dress well, and talk alot! Hey, I like that!

You are right, whatever works.

I think your image is really cool too (I like doing similar things in Photoshop)

Just not my thing for wearing. : ) Again just one opinion.
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Postby PCakes » Sun Mar 07, 2010 10:20 am

Good morning Vonna.. apologies..my last post on the wristbands was a little vague.. my mistake..i thought that you had already commented to this on 'CCSVI-in-Multiple-Sclerosis' facebook.. this is the post i was referring to.. posted approx 2 days ago..

'Serge Gavrilov' Hello Eveyone,
Need your suggestion. I am ordering the rubber bracelets to support CCSVI and use sales for donations and hopefully spreading the word. I was thinking of putting "CCSVI - MS Liberation Treatment". What do you think? What color you think is the good to use?
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Postby Vonna » Sun Mar 07, 2010 4:52 pm

Hi PCakes,
I have not seen this post you are referring to. I am going with red and blue for the things I'm doing simply because it is the color of oxygenated and de-oxygenated blood. Would be great if this would catch on so that everything would color coordinate. However, I am not the one involved with the rubber bracelets. Thanks for getting back to me!
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Postby esta » Mon Mar 08, 2010 8:43 am

hI vONNA
i had to shorten the call out letter for t-shirts that i wanted to include in our chapter's newsletter, but now the addresses don't work????????
esta
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Postby Vonna » Mon Mar 08, 2010 8:53 am

Are you speaking of the web addresses for pages on the website?
I did purchase a domain name several days ago, and had things rerouted. I did NOT actually change the web address. Older web addresses should still work, at they have for me.

Please give me the addresses that don't work.

Has the newsletter already went to print?

I want to do whatever it takes to fix this!
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Postby esta » Mon Mar 08, 2010 9:07 am

thanks vonna, i just wish i knew what i was doing. no, the newsletter hasn't gone out yet, hence my panic. i will try them now...
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Postby esta » Tue Mar 09, 2010 11:39 am

Hi vonna
regarding our chapter newsletter and ordering the t-shirts... it's done! they will e-mail me what they want to order and I will e-mail you the total, however, the newsletter does not go out until Friday, then there will be a few days delay. Hope this is okay with you?
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Postby Vonna » Tue Mar 09, 2010 11:47 am

Hi esta,
This is great news! We hope to have the store up by the end of the week, and they can order directly. Thank you so much for doing this!
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Postby Vonna » Thu Mar 11, 2010 2:42 am

Hello everyone,

We have been working hard on the T-Shirts and the business cards. We are getting very ready to be able to make these things available.

Sample shirts arrived in the US today, and I am told they look great! To be the first to know when the shirts are available to order, please email me at ccsvi@live.com Give me a guess on about how many shirts you will need, if possible. You are not bound to this number, I just need an estimate. This will be helpful to me, and speed up the ordering process.

In order to make our plans reality, we need lots of help!

I have been working on a structure that I hope will be useful in organizing our efforts.

We will need Education Leaders in many areas.

If you are willing to do your best, you are qualified for the job! We need everyone!

There is no commitment because we know what it is like to deal with MS.

We just ask that you email us if you need someone else to step in for you.

Here are the lists of Education Leaders we need. You may have ready notified me and volunteered to help. If you don’t see your information, please send me a reminder. I am working to get these entered.

IT WILL BE VERY HELPFUL IF YOU EMAIL ME EXACTLY WHICH AREA YOU
WOULD LIKE TO HELP IN.

*LIST YOUR NAME AS YOU WOULD LIKE IT TO APPEAR ON THE WEBSITE

*LIST YOUR CONTACT INFORMATION AS YOU WOULD LIKE IT TO APPEAR ON THE WEBSITE

If you are not sure where you can help; or have other comments, questions, or concerns, I will do my best to help.

Per Continent
http://ccsviworldwidevictory.com/contactus.aspx

Per Country
http://ccsviworldwidevictory.com/Africa.aspx
http://ccsviworldwidevictory.com/Asia.aspx
http://ccsviworldwidevictory.com/Australia.aspx
http://ccsviworldwidevictory.com/Europe.aspx
http://ccsviworldwidevictory.com/NorthAmerica.aspx
http://ccsviworldwidevictory.com/SouthAmerica.aspx

Per MS Walk Cities
http://ccsviworldwidevictory.com/Canada.aspx
http://ccsviworldwidevictory.com/USA.aspx

This is the beginning of our Educators Toolbox. We have plans to add many other helpful items here. Our goal is to provide you with valuable tools that will make education and awareness of CCSVI more productive. We have many more ideas that will be coming to the toolbox soon. This is only a preview to give you an idea what we have in mind.

Feel free to give your suggestions.
http://ccsviworldwidevictory.com/EducatorsToolbox.aspx

We need Education Administrators and Coordinators ASAP, as the MS walks in US and Canada have already begun!

Thanks so much!

Lavonna
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Postby Vonna » Sat Mar 13, 2010 11:42 am

Interesting: The MS society has announced that they are "fast-tracking" efforts to fund research regarding CCSVI. That's what the beginning of this post was about!

Are they "hearing" us?

From the NMSS website:

Mar 11, 2010
UPDATE: CCSVI - International Scientific Panel Formed to Expedite Review of Submitted CCSVI Research Proposals

http://www.nationalmssociety.org/news/n ... x?nid=2866

Q: Is it true as some people have suggested that the Society’s dependence on money from the pharmaceutical industry is impeding its support of Dr. Zamboni’s research?
A: No. Less than 4% of the Society’s annual income is received from the pharmaceutical industry. The majority of the funds that the Society uses to support our research and service programs come from special events and the donations of private individuals committed to ending MS. Further, we are fast-tracking our efforts to fund research regarding CCSVI and working in partnerships with MS organizations and experts worldwide to better understand and move forward Dr. Zamboni’s findings.

http://www.nationalmssociety.org/news/n ... x?nid=2206
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Postby bohemianbill » Sat Mar 13, 2010 7:41 pm

Vonna,

sure looks familiar, wonder if there idea of supporting CCSVI equates

to a paltry 100,000 as in Canada. I would assume NMSS contribution would

be at least 1,000,000 since the US has 10x's the population
.
Find it interesting that it looks like a cut and paste from the Canadian

research protocol for CCSVI research. Check it out its almost verbatum.

Am i the only one finding this odd or maybe I should rethink it and rejoice that both Countries seem to be on the same page for MS/CCSVI research. Thoughts?

http://www.mssociety.ca/en/research/res ... ms_rfa.htm
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Postby Vonna » Sat Mar 13, 2010 8:51 pm

Hello Bohemianbill,
good to hear from you!
Yes, just because they have posted this information doesn't mean that I think they are suddenly going to do all we feel they should.
This is likely another way to "appease" us.
We'll have to wait and see the fruit of their statements.
The links do not give dates as to when they expect to have a decision, just that they are going to expedite the review. Who knows what this really means.
I do not want to be accused of being bias, and if the MS society is willing to step up and do what is right, I want to be right there applauding them.
However, it will take much more than this to convince me.
As you said, they need to give to research in a way that really counts.
Last year, the MS walks raised $48 million dollars, this is stated in their magazine. It goes on to say that this amount is almost a quarter of the Society's total income for the year. This means that the total income for the year is around $200 million.
And how much of this is given to the amazing scientific discovery of CCSVI?
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