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.
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 firstname.lastname@example.org
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!
P.S. If you would like to follow the links in this note for more information, please go to this page:
http://www.facebook.com/note.php?create ... 4795677929