Lavonna Prince In US or Canada and want to help with CCSVI awareness? Please consider attending an MS walk in your area. We will be wearing CCSVI awareness t-shirts and passing out CCSVI business cards. You don't have to give to the MS society to attend. Proceeds from shirt sales will go to CCSVI research- Dr. Haacke
This information is specifically for the US and Canada, however all others can be included. I have set up the same type of structure for other countries, but I an finding I can only do so much. If you can help with another country, please let me know. Here's the thing: I have had lots of people say they can help. This is awesome! However, I need a LEADER who will TAKE CHARGE and make decisions. I am finding I don't have the time to instruct each individual. I will be glad to help any way I can by adding pages, links, advertising, promoting, etc. I need someone who will just simply let me know what they need me to do. : ) This person can copy the same format that the US and Canada are following if they would like.
Okay, what I will attempt to do here is cover as many common questions about this awareness project as possible. You are always welcome to contact me here or at ccsvi@live.com as well.
First, I want to say that this project started because I realized that if we wanted the Liberation Procedure to become a reality for people with MS all over the world, we would need to become our own advocates. I had a huge amount of help with the final decision on how to proceed with all of this, and I am very grateful!
Originally, I had suggested that we do Multiple Stenosis walks instead of participating in the MS Society Multiple Sclerosis walks. This was because it was my opinion that raising money for the MS Society was not the best way to get testing and treatment for CCSVI. For more on how I feel about the MS Society, you can visit here.
That said, with many thoughtful suggestions, I came to realize that the MS walks were wonderful CCSVI awareness opportunities! You see, you do not have to pay to be there! In fact, when my group went to register, the lady at the table noticed that my brother had written zero sponsors and zero donations. In other words, he had not given or raised any money for the MS Society. Upon seeing this, the lady acted put off by this, and said there was no reason for any of us to register if we had no money to turn in. All fourteen of us stepped out of line, leaving a gaping hole, as I had encouraged my group not to donate to the society. This for me, was a bigger statement to the MS Society than if we had just simply not shown up.
There are many differing opinions on all this, and I would like to be sensitive to them all. So, this plan can include all opinions. If you are okay with giving to the MS Society, then you can do so. If you cannot bring yourself to attend an MS Society event, this is understandable too. This structure can still work for you, as you can simply plan to meet in a different location the day of the walk and do all the awareness activities that those attending the walks will do.
Another reason I came to like the idea of attending the walks is that there are huge amounts of people there that are affected by MS! This, of course, is very important. Third, the media and press are already there and this means possibilities!
Here's what we came up with. Work toward getting CCSVI Awareness Captains for each State or Provence. These Awareness Captains would in turn work toward getting Education Coordinators for each city that has an MS walk. One note here, although we are speaking of the MS walks at the moment, some of these walks have already happened. These cities still need Education Coordinators (persons passionate about getting the word out about CCSVI). This way, other events can be easily planned and a leader is already in place.
A perfect example of this is a May 5th demonstration, where people are out locally all over the globe promoting CCSVI awareness.
Here is a formal description of the roles that each leader has, however I don't want people to decide they are not capable on the basis of this formal list. This is just for suggestion and instruction. Whatever help we can get would be greatly appreciated, and there are no special skills required.
Here is the list of Captains and Education Coordinators for the US.
Here is a list of Captains and Education Coordinators for Canada.
Please check for your location, and if a Captain or Education Coordinator is still needed, consider volunteering. If the position is filled, please contact the person filling it and let them know you would like to be involved.
Also, if you are from the US please visit here, find your state, and join the group of your state.
When you volunteer to be the Captain of a state, you will be added as the group administrator. This will allow you to send everyone in the group messages. Your name will also be added to the list and posted online.
*Important! When you volunteer to be a Captain, please let me know what name to post, and if it is okay to post your email. If it is, please supply me with the email. If you would rather me use your facebook page, please supply me with the link to it. This will save me MUCH time, if you can give me this information up front.
Since Canada already has many groups for the Proviences, I didn't feel comfortable creating groups for each of them. So hopefully, you will be able to use the groups that are already in place to plan your meetings and post your information, etc. If someone could take the time to arrange the Canada groups and pages in alphabetical order, I could re-post them in a way that they are easy to find.
Before the event
Post this flyer around town prior to the event-add specific information to it.
Use these FREE digital tools to help get the word out
Post, post, post, advertise, promote, on CCSVI Worldwide Victory, your CCSVI Facebook State Group, your page, my page, send messages to your email list, and everywhere!
Be sure to order your supplies in advance, and make sure all that are involved in your event know to order supplies. It is our goal to have as many people at the events wearing CCSVI Awareness T-Shirts as possible. This alone can make a huge statement, so the more people, the more shirts, the bigger statement, the better!
Please send me the details of your event so a page like this can be created.
You can find the US walk information here.
You can find the Canada walk information here.
Another idea to connect with people in your area is here.
If you are an administrator of a State Group, you can go here to find all events, then post them as events on the facebook group. To post events, go to the facebook group and look for the tab at the top called events.
Don't forget to make it a goal to get Education Coordinators for each event!
At the event
Wear CCSVI Awareness T-Shirts to the walk
Pass out CCSVI Awareness Business Cards at the walk
For those interested in more information, share this two page (front and back) letter.
Don't forget your camera and video camera! Please be sure to take lots of pictures, including a group photo! Video would be great.
After the event
Please write a description of how things turned out.
Share your story, pictures and video on CCSVI Worldwide Victory, your CCSVI Facebook State Group, your page, my page, and everywhere!
Also, please make sure you send this information to me so I can post it here.
If you think of additional information that would be helpful here, let me know.
Remember, you are always welcome to contact me here or at ccsvi@live.com as well.
Communication is how we make things happen!
http://ccsviworldwidevictory.com/FromtheBeginning.aspx