Marketing CCSVI

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

Marketing CCSVI

Postby Arcee » Fri Oct 23, 2009 4:00 pm

As we started discussing on another thread, it seems like it is time to add promotional materials, or swag, to our efforts. So anyone out there in marketing or graphic design or advertising who has any suggestions?

We're thinking that a logo and slogan for mugs and t-shirts might be good. How about a slogan contest? Here ar a couple to get the juices flowing:

1) 'CCSVI - sticking our necks out for progress '

2) 'CCSVI - progress in a different vein'
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby ozarkcanoer » Fri Oct 23, 2009 4:18 pm

I rather like the ghoulish venous mummy displayed at this website :

http://www.fondazionehilarescere.org/

It would attract more attention than just words... people would just HAVE to ask you what THE MUMMY is all about, LOL.
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Postby bestadmom » Fri Oct 23, 2009 4:44 pm

I think we might need ear muffs and a scarf! Maybe a hat too? I like "sticking our necks out...."

Let me put on my thinking cap and see what I come up with.

Cafe Press is a good place to get promo items - they make them as orders come in, and ship directly so there's no inventory, etc.
Last edited by bestadmom on Mon Apr 26, 2010 8:34 pm, edited 1 time in total.
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Postby CRHInv » Fri Oct 23, 2009 5:15 pm

How about:
Go with the flow
-or-
Go for the flow
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby cheerleader » Fri Oct 23, 2009 5:23 pm

from the other thread...said with tongue kinda in cheek, but I do think it's a good idea for fundraising. Notice I mentioned Dr. Z's mummy art. (Not a fan)

Go for it, gals!!! Let the CCSVI merchandising begin. My input is that the logo (t-shirt, mug, lunch box) has a punchy, catchy phrase...like zap's "the veins that drain the brain..." and no creepy art work (like Dr. Zamboni's website...sorry) but something hip and fun- like-
http://www.spectrumgenerations.org/Serv ... lation.asp

I know, what's so fun about MS??....but we're talking about rebranding a disease, right? You are the media savvy women....go for it!
cheer


I know you'll come up with the goods. My son's friends have used Cafe Press- well run company.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Fri Oct 23, 2009 5:31 pm

"the veins that drain the brain..."

Love that!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby sewwhat » Fri Oct 23, 2009 6:19 pm

Those are all great!
I'm going to play with the design aspect and post it if I come up with anything..
I like the mummy, creepy as he is...maybe because Halloween is almost here lol
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Postby bestadmom » Fri Oct 23, 2009 7:07 pm

Cafe Press will send a % of the sales back to organization. If we get this going we should donate the $ back to CCSVI research.
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Postby CureIous » Sat Oct 24, 2009 12:28 am

Reflux R' Us
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby ozarkcanoer » Sat Oct 24, 2009 6:52 am

Another thing I like about THE MUMMY is that it is on the Italian website and would show our respect for Dr. Zamboni !!!!! How about "MSers are being Zambonied !!!!!!!". Or for all of you with the stents, "I'v been Zambomied !!! Or for those of us who haven't been tested or stented/ballooned : "Just waiting to be Zambomied" !!! Everyone will think we are talking about hockey, LOL.

LOLOL

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Postby GiCi » Sat Oct 24, 2009 7:25 am

It is heart melting to read the enthusiasm with which the people posting on this topic are prepared to formulate ideas that could be helpful in promoting the concept of CCSVI. It is a touching example of the desire to help oneself and others.
Although I praise the initiative I must express some doubts about its possible effectiveness. It seems to me unlikely that a good slogan on pretty mugs or T-shirts may be able to mobilize the public opinion, and even less likely that it will be able to change the opinion of the present medical establishment.
In my opinion the road to follow is that one indicated by cheerleader: persistent and active spreading of the knowledge accumulated so far about CCSVI, questioning the medics, and demanding answers.
The team who treated me refuse to see new patients on the basis of "clinical governance": they believe Zamboni is right, but they wait for further evidence.
I felt devasted by their decision, but I do understand their reasons.
Please do not take my post as criticism to your marketing initiative. You have all my admiration
GiCi
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Postby radeck » Sat Oct 24, 2009 9:16 am

Seems to me the idea of distributing flyers was a good one. Even better than the few of us talking to physicians would be if we can first multiply 100-fold and than all those people talk to physicians. What happened to that idea? Seems to me one should be able to compile much of the convincing information there is on a small flyer.
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Postby Sharon » Sat Oct 24, 2009 9:52 am

Collectively, this group of people is amazing (oops, individually you are too!! :oops: ). The idea of a slogan and/or graphic to get people's attention is great. I do wonder about time spent on marketing T-shirts or mugs. I have found that unless those items are given away or actually sold at a public event, you do not get much bang for your buck and you might end up with a garage full of "stuff".

I agree with Radek and GiCi - the flyers will actually have useful information on them. Use those flyers as part of presentations to foundations and business organizations - universities and research centers. I have no artistic ability, so I will take myself out of the loop on the design. I sure would love to have a graphic on the business cards I am printing!! Cards have website links to Zamboni, Haacke, Univ of Buffalo, Stanford, Facebook and TIMS
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Postby Arcee » Sat Oct 24, 2009 10:00 am

Sounds like clarifying the marketing thread here may be a good idea. It is NOT meant to replace any of the other CCSVI outreach efforts. As you have read in other threads, many of us are networking with the doctors we know in our lives, and our North East group is doing phenomenally well with emails to doctors who may not know about CCSVI. We are offering up our medical records and our bodies, pre and post stent, for testing. It is an ongoing, time consuming, serious and exciting effort.

So having t-shirts, or mugs, or scarves (loved that idea, Michelle!) is just a way to reward ourselves, reward people we come in contact with who are interested, and trigger new conversations. It's just a classic, fun promotional thing. Some of us are starting to have meetings with interested doctors and I think it is a good tactic to leave them with something. We are not a pharma company, so they can accept our gift even if such pharma gifts are banned at their medical facility. Also, I think it would be a nice gesture to send a bunch of stuff to Dr. Dake's staff.

So we need a logo, and a slogan that will pique curiosity as well as provide a chuckle to those in the know. Send along your ideas!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby bestadmom » Sat Oct 24, 2009 10:10 am

..and when intlccsvi.org replaces the nmss, we will really need to market it. Any attorneys on here to set up a 501c3 non profit? any grant writers? I do pr and fundraising for a small nonprofit in my spare time and some grant apps, so I'm 10 steps ahead here (if only I could walk).
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