We need your input on a very important decision

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

Postby pegmegrund » Sat Feb 27, 2010 11:14 pm

Wow - OK, now I'm overwhelmed! Lots of great ideas.

I posted this on a few fb pages...

Vonna - thanks for the image! I love the blue background and wavy lines and the meaning behind it.

If we keep the top logo I suggest switching it and adding a question mark - 'Multiple Sclerosis = Multiple Stenosis?'

I'm still twitchy about using the word 'cure' - not that it's a dirty word, but... it seems too early... but that's just me! I would temper it a bit with what was mentioned above: 'Are we getting closer to a cure?'

I love the 'CCSVI - No Drain, No Gain' - I also love the Zamboni quote 'We are on the way to solve a puzzle'

I also love 'CCSVI - MS finally has a friend'

Can we wait a bit to see if others add their feedback?


PS - I'll work on text for the flyers/biz cards tomorrow and will send that along.
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Postby NHE » Sat Feb 27, 2010 11:58 pm

I get the following error message when trying view the t-shirt graphic.

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multiple stenosis walk

Postby msscooter » Sun Feb 28, 2010 12:03 am

hey Vonna,

love the MS=Multiple Stenosis concept. it is brilliant. simple

I'm with the others I want to work from within the MS walk system. Our goal is to accelerate the normal time frame for adopting a new "Big idea".

More people will benefit by driving the consensus among MS researchers with good information. As patients we'd be most effective producing clear accurate marketing materials and banners, signs & T-shirts and figuring out how best to distribute the materials at the MS walks where you have the very audience you want to reach. You really helped by creating a good information website. and redefining MS!!!

I do think we actually slow our progress by being confrontational. The CCSVI facts speak for themselves. we just need to share the good news.

also advocate for "donor advised giving" where people can mark their MS society donations for CCSVI research ONLY. Thank you so much for your enthusiasm and organizing skills. carol
Last edited by msscooter on Sun Feb 28, 2010 12:25 am, edited 1 time in total.
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Postby msscooter » Sun Feb 28, 2010 12:20 am

love the blue, how about putting the scans in puzzle pieces? and the no drain no gain is great! such good ideas!
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Postby Vonna » Sun Feb 28, 2010 12:38 am

NHE-Sorry for your trouble. If others are experiencing this, I would like to know. I am wondering if it could be a different browser causing the problem? Please try using firefox and see if this helps. Also, try this link instead.

http://cid-33aa83491adffaba.skydrive.li ... re-web.gif


Thanks again Pam, for offering to work with the flyers and business cards.
The question mark is a good idea-I'll work with it.
I'll also "temper" the cure part.

msscooter, I like your idea about the scans being puzzle pieces! This will be a challenge, but I'll work on it.

If we decide to go with the MS=MS on the front. I think-No Drain, No Gain is perfect for the back. When I told my kids about it, they loved it! They are ready to buy their T-Shirts and walk NOW!

bohemianbill has been providing me with information all evening and I have been posting it to the site. It's coming together. Here's what we have so far:

http://ccsvivictory.club.officelive.com ... Walks.aspx

I need help with the United States Part!

Let me know what ya'll think.

We're still open to ideas here, so keep em' commin'
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How to go about changing opinion

Postby Dovechick » Sun Feb 28, 2010 2:51 am

Hi Vonna,
What I say now is my personal opinion not that of the group I belong to http://www.facebook.com/ms.ccsvi.uk although in most instance I would say they were convergent.
We are having similar problems with our incarnation of the MS soc, and it is closely tied to what goes on with the MS soc of the States, (similarly to Ancestry.com model) That in itself is infuriating, as grant applications are actually vetted and approved by the parent society, not the home group. But that makes no odds as their stance in UK is the same as that in the States and therefore they are not going to look kindly on any application we make to them in any case. The societies have become so enmeshed with the parmaceutical industries that their structure would collapse if they deviated from the drug route. The bulk of their funding would disappear over night and the livelyhood of their employees would be at risk, as well as all the services and support they provide locally. Also they are not being candid with us, especially in regards to their answers to calls for their opinion on CCSVI, they tell us in the UK that they are an evidence based organisation yet their opinion on CCSVI was not evidence based in the slightest, it was merely an opinion on the part of one of their medical advisors.
Problems we face in the UK: (might be the same as yours) only organisation likely to fund clinical trials is the government, no money in it for drug companies who usually fund trials, but government has to be cautious about how they deal with this as pharmaceuticals are the 3rd largest income earner in the UK, if the gov aren't careful they will relocate some place else.
Other problems: Members of Parliament who represent us do not understand that the focus of MS has likely changed from autoimmunity to vascular problems, and asking to speak to neuros is not going to be much use... what do they know about it? Even for vascular surgeons and radiologists who are more likely to benefit from this research, there is only limited financial benefit to be had... Once the MS patient is treated they no longer are the goose that laid the golden eggs they used to be for medical people...

What ms-ccsvi-uk.org is going to do? We were going to join in the world wide ccsvi day on the 5th May, but unfortunately that appears to be the day before our general election, so all our MPs will be scattered across the country, and we are unlikely to get permission to march or demonstrate in London, we are possibly going to organise a workshop/seminar in London, we will now join the worldwide MS day on May 26th and try to make a big noise about CCSVI, we are going to meet with MPs currently on Health and MS committees in Parliament, we are getting our website organised to provide sample letters for our members to write to their MPs and doctors.... etc
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby ms2009 » Sun Feb 28, 2010 9:30 am

Greetings,
This is a very good idea. I am wondering if anyone from Montreal or Quebec is on board in order to coordinate something locally.

I would like to note the need for a one simple page introduction about MS And CCSVI and why people should help.

We know that MS societies are not doing much. However, the campaign should be neutral from this aspect. We can lobby personally against the current trends in the societies but this campaign should be more neutral in order to gain people's trust.
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Postby Vonna » Sun Feb 28, 2010 9:35 am

ms2009,
Just got this page up and running last night:

http://ccsvivictory.club.officelive.com ... Walks.aspx

It is meant to get an organized group together from all over as you are speaking of.
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Postby ms2009 » Sun Feb 28, 2010 10:15 am

Vonna wrote:ms2009,
Just got this page up and running last night:

http://ccsvivictory.club.officelive.com ... Walks.aspx

It is meant to get an organized group together from all over as you are speaking of.

Thanks Vonna. I will be helping with the activities in Montreal. Is this organized by the MS society?
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Postby Vonna » Sun Feb 28, 2010 10:22 am

"Is this organized by the MS society?"


Don't I wish...

The walks listed are organized by the society, but not what is being discussed on this Message Board.

ms2009, Can I list you as a contact for Montreal? If so, what name and contact info. should I give?
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Canadian CCSVI EDUCATORS

Postby bohemianbill » Sun Feb 28, 2010 10:59 am

Hi ho
I'm esta on this is MS.com
I'm in the Penticton walk
And would love to be part of the CCSVI campaign
Count me in as a coordinator. I'm hoping I can delegate if it gets too overwhelming,
Right now I'm just waiting to order T-shirts and business cards.
I think this is going to work amazingly, thank you so much for your energy and your talents!!
Diane


Diane thank you so much for your commitment, like Lavonna (who is spearheading this effort) I believe we are in the fight of our lives. Our only Offense is Education,

We must be the Light that shines the way for CCSVI. As Educators we must live, eat, breath CCSVI. WE must start (practise) on those closes to us, family and friends.

As we enlighten, you will find people will be of three school of thoughts a) CCSVI is vodoo medicine. b) CCSVI is the Holy Grail for MS c) just plain apathy.

WE are targeting B & C, A has already formulated their opinion and may have an agenda, do not waste time on these people they will do everything in there power to undermine your efforts

The b group will be all over this like we are! so ask them to commit to ccsvi, we are formulating such behavior as we speak (if you have ideas please continue to focus your replies on the TiMS thread) i.e.: walk the MS walk for CCSVI, obtaining email addresses to keep the people informed (newsletters, research updates etc), Letter, email campaigns, etc.

A) group are the disenfranchised, "sorry you have MS" but what has that to do with me? These people are our true focus, these are the sleeping giants, these are the ones that currently donate money, its a way of feeling that one has done their civic duty!(Canada leads the way with most donated per capita) As we all know if you are not directly associated with MS, CCSVI might as well be the man on the moon.

As educators our job will be to awaken the sleeping Giant! Without gaining the general publics support our efforts may be doomed.

You will be added next to the Penticton Walk site as ESTA, MY email address will also be added, its important that there is one administrator to start of with. We must be diligent to ensure conformity with one message.

Thank You

Your email has started my day off just right!

Go Canada!

bohemianbill

Keep the heat to the feet
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Postby bohemianbill » Sun Feb 28, 2010 11:24 am

Vonna wrote:
"Is this organized by the MS society?"


Don't I wish...

The walks listed are organized by the society, but not what is being discussed on this Message Board.

ms2009, Can I list you as a contact for Montreal? If so, what name and contact info. should I give?


Vonna, as per a previous thread you were asking for help answering your email. may i suggest the following. Allow me to co ordinate Canada's efforts,
direct all Canadian inquiries to llarshllarsh@cogeco.ca . As this grows than Canada will be broke up into several zones each having their own administartor but the key is that every idea, event plan of action is filtered to the top so that what works and what does not can be discussed.

This must not become a disjointed effort! The right hand needs to know what the left is doing at all times.

BB

keep the heat to the feet--

Go Canada:)
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Postby Vonna » Sun Feb 28, 2010 5:30 pm

Hello bohemianbill, It is awesome for you to volunteer for all Canadian related messages go to you. This will take a GREAT load off me. I do have a lot of projects going right now, so I REALLY appreciate the initiative. When you gather information, just go ahead and send it along to me, and I can post it. This system should be very do-able.

By the way, if you are in the US, we need educators also! For now, until someone else volunteers for the job, send US inquiries to ccsvi@live.com

Other locations are encouraged to get involved as well. Just let me know if you are interested.

I'm working on a new design for the logo. I'll try to have something ready ASAP so you all can give more feedback.
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Postby Vonna » Sun Feb 28, 2010 5:42 pm

By the way, I was out for a few hours and when I came back, I had 30 emails!
bohemianbill has offered to take a big load off me, but I have another request. You see, everyone that signs the guest book is asked if they would like to help or not. Right now, I go through each of these signature emails one at a time to see who would like to help. If someone offers to help, their name and contact information is added to the address book by hand and I put them into categories based on their location. It's not as hard as it may sound, it just takes a couple minutes for each one. However, it takes away time that I could be designing or adding content to the website, etc...I have, what I feel is a fairly simple solution if someone would like to help with this.

We are building a database of people affected by MS from around the globe. By putting the helpers in categories, we can e-mail a certain group of people, or everyone, depending on the message and who it needs to get to. This way, we can stay in contact! :D
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Postby Vonna » Mon Mar 01, 2010 1:23 am

Hello everyone,
pegmegrund has been working very hard on a one page simple Who, What, Where, When, How on CCSVI. The purpose of the one page is to hand out to those that know little or nothing about CCSVI, in order to peak their interest and want to learn more. She has kept it simple and clear.

I wanted you all to have a chance to look over what she has put together in case we might have missed something. We only have so much room on a piece of paper, but feel free to let us know if you feel something needs to be changed.

Here it is:

CCSVI – Chronic Cerebrospinal Venous Insufficiency and MS

What is CCSVI?
CCSVI is a chronic condition where blood leaving the brain and spine is slowed or blocked in its return to the heart. This condition is caused by a blockage or narrowing in the veins in the neck. This impaired blood flow may contribute to nervous system damage in MS.
What is the connection to MS?
The majority of people with MS tested so far have CCSVI. It offers a new way to look at MS and presents a new possible cause.
Why do I need to know about it?
People with MS who have been treated for CCSVI are shown to have a reduction in the daily symptoms of MS as well as decreases in relapses and progression. Treating CCSVI to improve blood flow in the veins that drain the brain can be done with balloon angioplasty or stents.
Where is the research happening?
Research into this theory started in Italy with Professor Paolo Zamboni and is now being planned for and carried out around the world:
• Bulgaria
• Canada
• France
• Germany
• Italy
• Jordan
• Poland
• USA
When?
Research is being conducted now, and there are several sites offering treatment.
How do I get more information about CCSVI?
Here are several great sites with a lot of information to get you started:
http://ccsvivictory.club.officelive.com
http://csvi-ms.net/en
http://www.thisisms.com/forum-40.html
• CCSVI in Multiple Sclerosis Facebook page


I plan to make this available for print ASAP, so would love your feedback on this!
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