We need your input on a very important decision

[cathyb]

Hey, me again.

I kindof feel like I hijacked the thread, and that wasn't my intention. I guess because I participated twice in the challenge walk (one year we were top fundraising team!) and all the practice walks and blisters and endless moleskin, I felt the need to comment. All of this is just my humble opinion.

[Ruthless67]

Vonna,

I’m 12 years into my MS diagnosis and have yet to attend my first, or for that matter, any National Multiple Sclerosis Society function. Be it a chapter meeting or a walk. From day 2 of my diagnosis I began my own search for answers which has ultimately led me to Tims and CCSVI.
With the initial results posted from the Buffalo trials and their ongoing enthusiasm towards continuing this avenue of research I’m finally motivated to participate.
I am actively pursuing having the diagnostics done for CCSVI, either here in California or when I get back home to Montana. I plan on attending the MS Chapter meetings at home and to make many friends there. After an appropriate amount of time and when I feel they have welcomed me into the fold, I plan on doing my best to educate the chapter on CCSVI. Maybe by spreading the word that way I can reach some folks who have not heard of the research.
I also find the Tims board, Sammy Jo’s, Wheelchair Kamikaze, and Lobbies blogs and Cheerleader’s face book page, to be a wealth of CCSVI information. And I applaud you Vonna for taking on such a large project and if I come up with any bright ideas of my own, I’ll certainly share them with you and the rest of Tims.

bohemianbill

CCSVI a Piece of the MS PUZZLE-We need your SUPPORT to see just how Big of a Piece it is!

I like the above slogan the best so far and I agree when you say:

1) the focus should be educating people on CCSVI, who,what,when,were,why

Cathy,

I agree, I don’t want to come across as adversarial, that wouldn’t fly with me at all if I were participating in the walk either. After all the practice walks and blisters and endless moleskin, I wouldn’t like it if someone came along and told me “It wasn’t worth my efforts!” So like Bill stated above, education is probably the way to go. By just handing out informational flyers we are only making the information available to those who may not of heard about CCSVI yet. (Kind of like just handing out flyers for a local Pizza joint, lol.) If the people handing out the fliers are well versed enough to answer any questions that might arise, that would be a major plus. Might even want to think about placing flyers in the wiper blades of the vehicles parked by the walkathons.

Lora

[Vonna]

This is they type of discussion and feedback I am looking for.

Cathy, you raise good points that the fund raising will have already happened beforehand and all. It is good to hear from those who have participated in the walks.

The biggest issue is awareness, the fund raising would just be an added plus.

Your idea is very intriguing. However, I do know of a lot of people who have stated very strongly that they will not attend another MS walk, or give to the societies.

It is important that we have this discussion, and for others to state how they feel.

We will not all be able to perfectly agree 100% on every detail, but we need to band together as a team and move forward TOGETHER.

For me, those of you that have had the opportunity to participate in the walks did so with the best of intentions, and should be applauded. I personally don't see that the past walks were a waste of time at all. They raised awareness! That's just me though, and those that have actually participated in the walks obviously feel differently. I can understand this.

I also agree that a separate walk would be much harder to actually get together and accomplish. Though, on the other hand, I can see it accomplishing way more in the end...The awareness factor could potentially be huge compared to handing out flyers at the "official" walk. If...we could actually accomplish it.

Please everyone, give your input here! I AM listening.

I am working on some projects also, and need your slogans, so please let me know your ideas!

[pegmegrund]

I like the idea of the Multiple Stenosis walks, but agree that it would be difficult to pull off in a short amount of time for this year. This is a good time to start planning for next year.

I have benefitted from several NMSS programs in the past. I personally have not written off the NMSS. While I wish they would move faster, I actually think they're moving as fast as they can for a large organization. Just my opinion.

Several years ago I did the MS Walk in my area and wore a T-shirt that I bought onlne from another MS'er who was raising funds with the T-shirt sales. The T-shirt was her artwork, of a cartoon-like monster holding a 2x4 on the front. On the back, it said something like 'Whack MS with a 2x4.' It got a lot of attention and comments because it was unique. I think I ordered it from a website called zazzle, with proceeds going to her.

I would be willing to sign up for this year's walk and wear a CCSVI T-shirt in the walk. I'm not oppposed to paying the minimum to be involved. If someone is willing to design a CCSVI T-shirt and have it for sale online, the funds raised from online sales could go to CCSVI research. I'll walk, and have with me small business cards or index cards to give out to people if they don't know what CCSVI is... sort of a mini-version of the flyers Bill has talked about earlier.

If some people don't want to participate in the walk, they could still have the same T-shirt and distribute info outside the walk venue, or wave a sign as cars arrive at the event.

We could even use the 'I'm walking for...' idea that has been used at past NMSS walks. I remember them having cards where you could fill in the name of who you were walking for and pin it to your shirt.

The T-shirt could read 'I'm walking for CCSVI research' and 'Ask me for more info.' Are there any artists out there who are willing to design something?

I don't know... I'm rambing now.

What I'm interested in is awareness and a respectful request to be heard, and a request for collaboration...

Thanks-
Pam

[Brightspot]

I agree with BB.
I love the idea of handing out pamphlets at the MS Society events. I don't think we need to give people free stuff..just information.
I do not think we require any permission to hand out information on public property.
I love Vonna's quick few ideas to get us started!
If we come up with a couple of variations on an educational one page pamphlet, we each print one or two off, then get copies at kinkos or some such place.
I will be happy to pay for the printing of a few hundred and to hand them out.
Let's all do it!

[Vonna]

pegmegrund,
I had thought of the idea of the T-shirts as well.
I think this is great! It will get a message across without even saying anything, and it will raise money!
Also, like you said, people could still show up with their T-shirts on and whatever else, and just not do the walk.
I have done quite an extensive amount of digital graphic work in the past, and would love to try my hand at a T-shirt design. We could have several designs submitted, and vote or something if we wanted.
I think it is very important that the shirts all have the same general look. the messages could be slightly different, but they need to all clearly match.
Also, we could continue wearing and selling these shirts long after the event.

I am really wanting a few more slogan ideas, as I am excited to get working on a design!

Like you all have already said, if we get the design together, everyone can print independently. That's great!

More soon!

[Vonna]

For all those who have walked in the past, is it required you wear the "official" MS T-Shirt?

[Vonna]

I can design the pamphlet, but would like some help with the wording if anyone is interested.

The focus should be educating people on CCSVI.

Who?

What?

When?

Where?

Why?

Help me answer these questions in a short, understandable, informative way.

What other information should the flyer have on it?

[pegmegrund]

For all those who have walked in the past, is it required you wear the "official" MS T-Shirt?

No - not that I've noticed. You usually get a 'free' T-shirt at the event, but you don't have to wear it.

I just found the old MS Avenger T-shirt that I wore a few years ago is still on zazzle, so it is certainly something that can continue to raise funds after the walk.

[pegmegrund]

I can design the pamphlet, but would like some help with the wording if anyone is interested.

I'd be happy to help with this... and I'm also willing to help with your website as well.

Thanks-
Pam

[bohemianbill]

Now I am becoming excited!

Suggestion for T shirt slogan, along the line of 'piece of the M.S. puzzle'

design puzzle pieces with the individual letters CCSVI on each piece.

------------------------------------------------------------------------------------

Front of T shirt or Back (what ever you prefer)

Have the word M.S. (printed on top of the puzzle pieces).


M.S.

Than 4 puzzle piece's with a large C small letters hronic, C erebral, V enous. I nsufficiency.

Back of T shirt

Cure
Dare To Dream

(as per Eric593 suggestion) Anybody Else with an idea?
-------------------------------------------------------------------------------------
Vonna,

We need to add a volunteer page to the site re administrators for each community, as an example i volunteer to co ordinate the Windsor, Ontario CCSVI Education Day. There are 41 Ontario chapters, we need to list them and ask people to commit to each chapter.

Personally I would like to focus on Windsor's MS walk on April 18,2010.
I know of no other like minded people in my area so if you are reading this please let me know if you are interested in helping.

I will put an add in the personal section of the newspaper looking for CCSVI Educators, also add an AD to KIJIJI, any other suggestions would be appreciated.

I am thinking of setting up a table, CCSVI Banner attached, will try to obtain as many email addresses as possible so that a co ordinated electronic education campaign can be designed.

Cathyb suggested some type of giveaway with CCSVI emblazoned on the product, anybody out there with a cost effective idea, Balloons? Pens, Hats.

Important, this is not a fund raiser so each volunteer will incur some expense, please be aware.

WE are not in competition with the Society, we are there to help them Educate, we are there to help spread the word on all things CCSVI. We are there to make sure the TRUTH is known.

This will be but the first step, if we do it right, we will obtain a big leg up for CCSVI.

Keep the heat to the feet

BB

Also Vonna are we able to upload pics of CCSVI educational events on the WW web site, it will be an important visual for showing what worked and what did not!

Brightspot-Vancouver

Thanks for your enthusiasim, May I suggest somewhere in your literature you incorporate ' CCSVI Research - A Worthy Olympic Effort-'
need to cash in on all this Olympic euphoria

[eric593]

JMHO -

I would really like to see a little stronger statement than "CCSVI - piece of the puzzle?" or something of that nature. I think something more dramatic might help: "CCSVI - are we getting close to a cure?"

The MS Society for a while now seems to be focusing their ads more on the idea that we're close to a cure, and it has bothered me because I haven't seen the MS Society involved in any research anywhere near close to a "cure" yet. That word is so provocative.

But I DO like the idea of identifying CCSVI as bringing us potentially closer to a cure because it is being specific about a research idea that might have some legitimate "teeth" for us.

So that's just my idea to be a little stronger than "piece of the puzzle". Maybe "cure" is premature, but at least something to generate some real excitement that MS might just have a real avenue whose time has finally come for us.

My undying thanks to those working so hard towards bringing us some answers about whether CCSVI is our ticket out of MS hell. You all have a lot of cheerleaders behind you in the wings!

[bohemianbill]

Eric thanks for the input, the puzzle idea is that until research is completed
CCSVI will ONLY be a piece of the M.S. protocol.

The following is a quote from Zamboni

--Critics point to the placebo effect -- the power of the mind to affect dramatic change in the body -- which is why randomized clinical trials of the CCSVI diagnosis and procedure are critical.

Zamboni agrees.

"We are on the way to solve a puzzle," he said.

Scientists at the University of Buffalo just announced preliminary results of their research into the link between CCSVI and MS patients.

Using Doppler ultrasound they found more than 55 percent of patients with MS had the narrowing of the veins, compared to just 22 percent of the health controls--


Like you the word CURE seems so alien when it comes to M.S. at least that goes for my dear wifes experience, a gradual hideous progression to a wheel chair bound existence totally dependent on others.

I have incorporated your idea into the T shirt, 'Cure Dare We Dream'

You are right, its the Dream of a Cure that keeps her and others afflicted fighting the fight.

God Bless

Keep the heat to the Feet

BB

[cathyb]

Pam...

I love, love, LOVE the idea of participating in a walk and having a t-shirt available. I go to a support group of ms-ers and they are always promoting the walk in the DC area, so I can try to get them involved in going and mention "oh, buy this t-shirt too!". How can I participate with this if I just want to go on the walk and be a shirt-wearer?


Cathy

On a different note...you know most of the people with MS I have met seem to be waiting for someone to tell them what to do in regards to the disease (this is an observation only, with a very small N). I was disturbed at the last meeting I went to to find that nobody even knew what CCSVI was (and this was January of this year!). The only person that did know about it was the MD in the group (which I actually found heartening). I like the idea of wearing a tshirt to the MS walk because it's not complicated. I have the impression that simple, bite-sized chunks of information about this may wind up scoring more points. Take this observation or leave it, up to you. ;)[/list][/list]

[pegmegrund]

How can I participate with this if I just want to go on the walk and be a shirt-wearer?

I think just keep an eye out as the details become available...


I think the pamphlet/flyer/info card should definitely have a few online resources listed for folks to get more info, and a 'What can I do?' section.

I like the puzzle concept. I'm a bit cautious about using the word 'cure.'

What about something along the lines of 'CCSVI - We're beginning to solve the MyStery that is MS'