Marketing CCSVI

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

Postby bestadmom » Sun Nov 01, 2009 6:19 pm

Cah,

The link goes to a red x. But I'll wait for the next one.

I like MS, multiple stenosis, but I think CCSVI has to replace it because it's confusing when trying to "sell" the concept. Maybe there needs to be a second "logo" with red circle with diagonal line thru it and MS in the center. Like a no smoking sign?
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Postby CNClear » Sun Nov 01, 2009 6:38 pm

Cah, great job!
and I agree with bestadmom about the 'no ms' logo, too...good ideas!!

I think I already know where to start using them!! :D

Thanks...

Lisa
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Postby bestadmom » Sun Nov 01, 2009 6:44 pm

Me too! Lisa, your fund is going to be the kick off IntlCCSVI.org. We've got logo, tag line, outreach is happening. We need an attorney to set up a non-profit. There's got to be one on this forum - we've got so many talented professional people . Maybe Jeff can write us a`theme song??!!!!
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Postby cah » Sun Nov 01, 2009 6:52 pm

Hm, that's funny. When I click the link, it's valid. I'll ask the people on csvi-ms.net if I can put it on their space.

Well, if it's called multiple stenosis, at least thisisms, msif and others can keep their adresses :D

Couldn't be a "No smoking"-MS Sign misinterpreted as some "racist" thing against MSers? And it would be a second sign, messing up the composition. What about the fist hitting the letters MS? I'll try this.
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Postby bestadmom » Sun Nov 01, 2009 6:57 pm

Or the fist squeezing the MS? You can email me the hi-res logo when it's ready to michelle@jonbrown.net.
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Postby cah » Sun Nov 01, 2009 7:08 pm

Yes, squeezing or crushing the MS is what I meant.

I've tried another uploader:

http://img217.imageshack.us/img217/3500/ccsvi4high.jpg

But if you have the patience, wait a few days, the next version will be much better.
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Postby bestadmom » Sun Nov 01, 2009 7:11 pm

There must be a setting on my computer tht won't let me see the image. I can't get it but I'm patient
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Postby cah » Sun Nov 01, 2009 7:19 pm

Michelle,

try right-clicking the link an choose "save target as".

A thought on halloween: Isn't CCSVI like playing trick or treat (it) to your neurologist? :wink:
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Postby bestadmom » Sun Nov 01, 2009 7:31 pm

got it! Yes trick on the neurologists, treat for us!!!!
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Postby cah » Sun Nov 01, 2009 7:35 pm

Yes trick on the neurologists, treat for us!!!!


Well, then it's actually trick AND treat :)
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Postby Edser » Mon Nov 02, 2009 6:48 am

Bleed Us
DONT
Tease Us
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Postby bestadmom » Mon Nov 02, 2009 9:58 am

Our url's are registered!

My hubby did them and I didn;t like first two:
ccsvi.us and ccsvi.us.com so he also did
intlccsvi.org/.net and .com

ccsvi.org/.net and .com aren't available
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Postby joycesvoices » Tue Nov 03, 2009 9:13 am

For a little inspiration, see today's NY Times article, A Conversation with Brian J. Druker M.D. It relates the story of how the cancer wonder drug Gleevec came to market after people affected by chronic myeloid leukemia took their case to the drug's manufacturer.

"Through the internet, they generated a petition that landed on the C.E.O.'s desk, asking for greater access. That's how Phase 2 [of Gleevec] was rapidly expanded."

Although not the same exact situation, similar tactics might work for moving CCSVI treatment into the mainstream.
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Postby homefront » Wed Nov 11, 2009 8:58 am

Just had this response from MS Society UK to my enquiry as to why ccsvi is not on their site:

"We appreciate that our research web pages are not the easiest to navigate which is why we are updating them at the current time. One of the new features that we're planning for the web pages is an A-Z of MS research which will contain information about CCSVI. We are hoping to have the web pages updated before the end of the year."

Best Wishes
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How's this for a hairbrained idea?

Postby Ruthless67 » Fri Nov 13, 2009 7:30 pm

In April of 2008 I watched Ann Boroch talk to Montel on his show about her own quest to find a cure for her MS. She had written a book called Healing Multiple Sclerosis” Diet, Detox & Nutritional Makeover for Total Recovery.
I bought her book and after following her protocol for approximately 18 months now I know I’ve had improvements in my overall health and I think some slight improvement in my MS symptoms.

So I sent her an e-mail at ann@annboroch.com on 10/29 and asked her to give me her opinion about CCSVI and I attached this link http://www.atlasorthogonality.com:80/Pa ... outAO.html She replied that it was interesting but was non-committal. Kind of like when your mom says, “That’s nice, dear”. I will try again and send her more information, but maybe some others could do the same in the hopes that she just might just read some of it and then really take a closer look. Maybe, if we’re lucky, she could come on board or she might even get information about CCSVI to Montel Wiliiams. Now that would be AWESOME. Call me crazy….lol
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