Raising money for CCSVI Research - Please read.

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

Raising money for CCSVI Research - Please read.

Postby race4acure » Tue Jul 20, 2010 9:40 am

Dear Friends,

My husband, Chuck, is a triathlete. He can be seen running or biking around town as he trains. What you may not know is that right now Chuck is training to do an Ultra Triathlon. This consists of a 4.8 mile swim, 224 mile bike, and then a 52.4 mile run. He is doing this to raise money for the research of a new treatment for Multiple Sclerosis called CCSVI.

CCSVI stands for chronic cerebrospinal venous insufficiency. Dr. Zamboni, an Italian vascular surgeon discovered this while trying to find ways to help his wife who has MS. He discovered that veins carrying oxygen-depleted blood down the neck or spinal cord where narrowed, blocked or even twisted. This made the blood back up in a way that may be linked to MS damage. But more research is needed, this is like the chicken and the egg, are the blocked veins what cause the MS, or is it caused by the MS. Either way, patients that have blocked veins and undergo an angioplasty have marked improvement with their symptoms.

This procedure is undergoing various forms of testing here in the U.S. Dr. Krolczyk, http://health.usf.edu/medicine/neurolog ... olczyk.htm is one of the neurologists who went to Toronto to listen to Dr. Zamboni speak at a conference. He was so impressed with the procedure and Dr. Zamboni that he wants to pursue this procedure through furthering the research here in Florida.

There are more then 2.5 million people affected with MS worldwide, and 350,000 are here in the United States. One of them is my mom. I have watched her struggle with double vision and loss of strength and energy. I have heard her wake up crying in the night because the pain is too great to sleep through. I felt her loss as she had to give up her job because her body and mind would no longer cooperate. The time for watching ended when her treatment options ended. Now, it is time to do something. Please help us do our part to find a cure.

To make a donation go to http://www.microgiving.com/profile/chuck and click on the "Donate Now" button. You can uncheck the checkbox to donate to MicroGiving if you do not wish to contribute to their operational costs. If you donate you will receive an email receipt that can be used for a tax deduction.

If you are unable to donate at this time you can still help spread the word by sending this email to your friends.

Thank you,

Jessica

Here are links for more information if you are interested:
http://ckemeny.blogspot.com/
http://csvi-ms.net/en
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Postby MrSuccess » Tue Jul 20, 2010 11:09 am

Jessica & Chuck - Fund raising for MS or CCSVI is much appreciated.

At this point in the CCSVI story .... there are more questions than answers. This forum - TIMS - is a great source of information for pwMS.

In the past 6 months or so ..... this website has attracted some rather sketchy characters. Some asking for money ..... all with noble intentions ...of course :twisted:

If you have been following the CCSVI trail you should know the difficulties pwMS are having with finding CCSVI treatment .

The MS Societies of Canada and USA are funding investigational trials into CCSVI . To the tune of $ 2.4 million dollars.

Might I suggest you contact them and arrange to have your fundraising efforts be directed specifically to CCSVI research ?

This should entice the MS Societies to explore CCSVI in more detail.

As for now ....... until someone checks you out ......... I would exercise caution ........ and go with established organizations such as MS Societies.

There is another promising CCSVI organization about to begin operations .

I would prefer to see them get funding . Perhaps you may contact them and see if they are willing to work with you ? If you have to ask who this organization is ........... I'm putting up my red flag .








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Thanks for there reply

Postby race4acure » Tue Jul 20, 2010 11:17 am

Thanks for the reply. The money I raise is going directly to CCSVI research as USF. All of the donation routes I explored all took too much off the top for administrative fees (23-28%). It was actually very disappointing. The route I worked out puts 100% of the funds donated directly into CCSVI research. Heck, I was seriously considering the National MS Society until they told me they could not direct the funds to a particular branch of research (or that is what they told me).
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