Together, our voices are louder!

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

Together, our voices are louder!

Postby Vonna » Wed Feb 16, 2011 12:30 am

What a wonderful, exciting, strange, historic year it has been!

CCSVI is making history!!! I still look at the events of the past year on the verge of disbelief. Not that I don't believe CCSVI, I've seen my venogram pictures, and I am not just a "hypothesis". On the contrary, it is almost unbelievable that just 15 months ago I had no choice but to believe that Multiple Sclerosis was some mysterious plague that a person was destined to live and die with. That is, outside of a miracle of course.

My, how things have changed! I love the comments about how the internet has changed the doctor/patient relationship. We can be so much better informed now.

It encourages me so much to see so many people affected by MS working so hard for the good of each other.

Last year, we started a project that aimed at getting the word out about CCSVI. The project was born by a group of people that sincerely wanted to make a difference. Wonderful minds with great ideas made it happen. For the long version, click here. For the condensed version, continue reading.

1) A discussion developed about how to best get the word out about CCSVI.

2) The suggestion was made that we begin to have Multiple Stenosis walks rather than attending the Multiple Sclerosis walks.

3) Sound reasons were given as to why this might not be the best idea. Reasons included that this would be a monumental task, and it would be virtually impossible to have as many walks and as great a turn out as the MS society walks.

4) It was suggested that we attend the MS society walks and pass out literature, afterall, the people that needed the information about CCSVI were the people that would be attending the MS society walks!

5) Many expressed concerns that by attending the MS walks, we would be supporting the MS society in the eye of the public. Yet, many felt that the MS society was not truly doing their part to give CCSVI a fair chance. It was discussed that the MS society was a non-profit organization that was meant to be for the good of those affected by MS. Organizations and individuals give to the MS society intending to help those with MS. So, in essence, those affected by MS are the true "MS society".

6) It was proposed that we attend the MS society walks, but encourage people to give directly to CCSVI research rather than to the MS society. After all, there is no requirement to give in order to walk. The benefits would include letting the MS society know how interested we are in their supporting CCSVI research and treatment. We would be in contact with those affected by MS that had not yet heard of CCSVI. We could wear T-Shirts and caps that conveyed our message which would speak to those at the walk, as well as to the Media!

7) Next, be began the process of designing the shirt. We settled on blue and red to signify oxygenated blood versus de-oxygenated blood. After some discussion, we decided the words "Multiple Sclerosis" should be on the shirt even though we were promoting CCSVI. The reasoning was that those affected by MS are familiar with the term. If they have never heard of CCSVI, the letters mean nothing to them. After all, our goal is to speak to them, so we must speak the language they know. I would never have read a single article titled "CCSVI". However the title, "CCSVI in Multiple Sclerosis", now that caught my attention! It took about 8 revisions and a lot of input from many great minds to come up with the final design. We also designed business cards and literature.

8) Next, we found a company that was willing to print the shirts and keep them in stock. They were also willing to host a website for us. As an added bonus, we were able to purchase the shirts at a reasonable cost and still donate $3.00 per sale to CCSVI research. We chose Dr. Mark Haacke and the MRI Institute for Biomedical Research.

9) We began the task of asking for volunteers to become Captains for their state or Education Coordinators for a city in their area where a walk was taking place. These volunteers encouraged others to join in the effort.

10 ) Being the first year, we came a long way! We donated more than $600.00 to the Institute, and made headway on getting the word out! I had anticipated being able to give much more than this amount, and in case you are wondering let me explain. CCSVI Worldwide Victory paid for the shirts upfront. Wilson International then stocked "our merchandise" on their shelves and sold it for us. We still have merchandise in stock that has not sold in which CCSVI Worldwide Victory will get the full profits from! We will want to always keep about 250 shirts in stock, plus a few dozen caps. So, this year we are ahead of the game! We already have a good stock to start out with. Just in case you are wondering, CCSVI Worldwide Victory has never been paid proceeds from Wilson International.

So, now we are at the beginning of a new year full of MS walks. What a great opportunity to let our voice be heard! We already have the idea, the shirts and caps, the business cards, the literature, the website, and the help of each other. We are WAY ahead of where we were this time last year!

I would love to see people all over get involved in this. The biggest lesson that I learned last year is that there are tons of people eager to help, but I have to be able to properly direct them in HOW to help. Ideally, I should focus on the US and depend on other leaders to rally Canada and other locations. Last year, I had a great leader for Canada, and I am in need of someone to fill that role year.

I would like to focus to finding a Captain for each state in the US. Then, the Captain could focus on finding Education Coordinators for the walks in their state. Last year, my focus was on a huge amount of CCSVI projects. I feel that if I could make finding Captains for the US my goal, then they could round up the Coordinators. I would love to see every slot on these pages filled so that we could have representatives of CCSVI at every walk! Wouldn't that be awesome?

Click for US MS Walks

Click for Canadian MS Walks

The more people we have at the walks, the less the MS Society and the media can ignore us!

If you are interested in helping, please contact me my email is ccsvi@live.com.

I really need input at to how people are feeling about this. Is this the right direction? What do we need to change?

Thank you so much!

Lavonna

P.S. If you would like to follow the links in this note for more information, please go to this page:

[url]
http://www.facebook.com/note.php?create ... 4795677929[/url]
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ccsvi

Postby blossom » Fri Feb 18, 2011 10:46 pm

vonna, i have to tell you that your hard work is so much appreciated. you are so right together our voices are louder. thank you for all your efforts.

this has been one heck of a ride for sure. and the journey and answers is only at the beginning of a long highway full of twists and turns. but, when we are finally at our destination i feel it will be well worth all the bumps and detours we have had to go through. it's the side roads that have popped up on this journey just full of surprises and a fuller understanding. i feel all the side roads have to be checked out. we need them to get to the destination we all long for.

thanks again, vonna
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Re: ccsvi

Postby darcie » Mon Feb 21, 2011 9:37 am

blossom wrote:vonna, i have to tell you that your hard work is so much appreciated. you are so right together our voices are louder. thank you for all your efforts.

this has been one heck of a ride for sure. and the journey and answers is only at the beginning of a long highway full of twists and turns. but, when we are finally at our destination i feel it will be well worth all the bumps and detours we have had to go through. it's the side roads that have popped up on this journey just full of surprises and a fuller understanding. i feel all the side roads have to be checked out. we need them to get to the destination we all long for.

thanks again, vonna


Have confirmed DX of CCSVI. Test done about six onths ago. My voyage with this condition is amost 30yrs now. Still amazed that this is now
understood. I WANT MY BLOCKED VEINS CLEARED, VIA ANGIOPLASTY!
ASAP. Blood flow from the brain is important.

Cannot wait to hear more about politicians who want to support CCSVI
testing & treatment. Think about the thousands of those with CCSVI, their family & how about their friends?

How about testing young people & avoiding the cost of all the drugs which don't often work? How about avoiding the cost involved to care for those who become disabled in the prime of their life?

I would imagine that those with Health Canada are thinking about much of these things.
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Postby Cece » Mon Feb 21, 2011 11:16 am

If CCSVI treatment does indeed stop progression, what a boon this will be in terms of money saved on treatments and disability and economic productivity regained. Not to mention quality of life for so many!!!

Vonna, you have done so much, keep up the good work!
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Postby Vonna » Tue Feb 22, 2011 7:12 pm

Thank you all for your comments. I am trying to figure out if people are of the same mind set at last year.

In the US, it seems we have treatment centers, but little CCSVI awareness.
In Canada, it seems there is better awareness, yet still no treatment.

Both the US and Canada seem to be feeling as though the MS Society could be doing more for the cause.

So, last year the US focused on attending the MS Society walks (not donating the the MS Society, just attending the walks and giving directly to CCSVI research) in order to boost awareness.

While Canada focused on pro-testing, which did not include attending the MS Society walks.

This made sense, because we all have the same goal, but different challenges to make it happen.

So, my question is, do we make a big push for the US to attend the walks (Again, only for the purpose of awareness. NOT for the purpose of raising money for the MS Society) while Canada continues to pro-test?

I don't see how pro-testing is as appropriate here in the US as it is in Canada. The reason is because most people in the US still don't know what CCSVI is. This is why I say, that in the US what we need is awareness. We have testing and treatment centers, so what are we protesting? That we want insurance companies to pay? Okay, but many of them already are, and will protesting help? That we want the MS Society to do more? Yes, we definitely want this, but if people don't know what CCSVI is, how can they support this?

I am looking for your thoughts, opinions, and suggestions. As always, I feel that if we are together, we can get more accomplished.

What is the best plan for the US? Do we attend the MS Society walks, wear our CCSVI shirts, pass out our CCSVI business cards and CCSVI literature, and promote CCSVI awareness. All the while encouraging people to give directly to CCSVI research rather than to the society.

This is what the majority felt was best last year. Is this still how the majority feels? The walks start soon, so it's time to move forward! :D
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What is your message ?

Postby MarkW » Wed Feb 23, 2011 9:01 am

I see lots of use of the words liberation, cure and cause on Canadian websites and posts. These words weaken your message. "Treating CCSVI syndrome with balloon venoplasty" is a justifiable message but seems too simple for some.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Wed Feb 23, 2011 9:46 am

In the US, it seems we have treatment centers, but little CCSVI awareness.
In Canada, it seems there is better awareness, yet still no treatment.

This is a good analysis of the situation.

The CCSVI Walk-n-roll is intended to increase awareness, that is coming up soon.

http://walkandrolltampa2011.ccsvi.org/ccsvi/
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Postby Vonna » Wed Feb 23, 2011 1:51 pm

Thanks for your comment CeCe.

I agree that the walk-n-roll is an awesome event. If we could have one of those in every major city in the US, it would be wonderful.

Unfortunately, I can't be in Florida. Plus, I don't feel I can adequately plan a walk-n-roll in my area. However, I can attend an event that is already planned and promote CCSVI awareness. :o)
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Postby Cece » Thu Feb 24, 2011 1:05 pm

Vonna, you are right, and the MS walks are a great place to reach people with MS and people who care about people with MS.

I looked at what you put together here: http://ccsviworldwidevictory.com/USA.aspx

Lots of states still needing state captains. Here at TIMS, we are well-versed in CCSVI, I would trust any one of us here with this.

Captains are needed in Alaska, Arizona, Arkansas, Colorado, Connecticut, Delaware, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Minnesota, Mississippi, Missouri, Montana, Nebraska, New Hampshire, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Dakota, Texas, Utah, Vermont, Washington, Washington DC, Wisconsin, and Wyoming.
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Postby Vonna » Thu Feb 24, 2011 2:57 pm

I see lots of use of the words liberation, cure and cause on Canadian websites and posts. These words weaken your message. "Treating CCSVI syndrome with balloon venoplasty" is a justifiable message but seems too simple for some.

MarkW


Hi Mark, Sorry I missed your comment until now. I understand what you are saying about using these words. Canada knows about CCSVI, at least much more than the US. They know that CCSVI and MS are related. I understand why people would want CCSVI to stand on its own, without relation to MS. I agree that people should have access to treatment for CCSVI whether they have an MS diagnosis or not. Canada is not treating MS patients fairly simply because they have an MS diagnosis.

Now, let's consider someone that has MS and knows nothing of CCSVI. In the US, this is easy to imagine. Not a single person that I spoke to about this knew anything of CCSVI until I told them. There is not an abundance of news casts and articles about it like there is in Canada. So, here is this person with MS (that has not heard of CCSVI) and they are presented with an article titled, "Treating CCSVI syndrome with balloon venoplasty". Are they likely to even read the article? This statement does not speak to the person with MS in any way. How would a person with MS know they should be tested for CCSVI?

I completely understand that we should all have access to CCSVI treatment whether we have MS or not. However, I don't know how we can deny that the two are very closely related. Many Canadians with MS are moving away from connecting MS and CCSVI so they can be treated on the basis of CCSVI rather than MS. This is great, however, they all know that they are in fact related! The United States MS population (the majority that is, with the exception of those of us on the net) are not aware of this yet.

Does this make sense?

CeCe, thank you so much for your list of states that need State Captains. Some of these walks are next month, and many are in April. So, the time to prepare is now! :)
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