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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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ccsvifoundation
PostPosted: Thu Sep 30, 2010 7:45 am 
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Welcome to the CCSVI Foundation! We are a registered nonprofit multiple sclerosis patient advocacy organization, dedicated to raising awareness of chronic cerebro-spinal venous insufficiency (CCSVI) in multiple sclerosis. Helping patients get the information they need, to get the testing and treatment available to them.

The sudden emergence of CCSVI as an important factor in multiple sclerosis and the great promise of CCSVI treatment for slowing or perhaps even halting MS disease progression for many is pivital.

We would love to hear from you! Please keep in mind that The CCSVI Foundation does not offer medical advice or advice on which testing or treatment center to choose.

The CCSVI Foundation, Inc.
Phone: 313-758-0065
Info@ccsvifoundation.org
http://www.ccsvifoundation.org/
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bretzke
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PostPosted: Thu Sep 30, 2010 2:22 pm 
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Who is heading up this foundation? Looks like a Michigan phone number.

Brian
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cheerleader
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PostPosted: Thu Sep 30, 2010 2:30 pm 
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Hmmm...don't know who this is. Maybe they'll post some background.
CCSVI Alliance was started by the people who first wrote about CCSVI right here on TIMS. But I'm sure many more groups will be organizing around the world.

Just a tip: Before you send money, always make sure a charity has 501c3 status (that's the official US tax status) and make sure you know who is at the helm.

cheer
www.ccsvi.org
aka Joan Beal
director of CCSVI Alliance

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PCakes
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PostPosted: Thu Sep 30, 2010 2:46 pm 
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excerpt from the 'FAQ' section.. ? this is worrisome

Quote:
The risks associated with angioplasty for CCSVI treatment are minimal. So far out of roughly 3,000 patients worldwide there have been two deaths. One was from a stent that was placed in the jugular vein of a patient and that stent traveled to the heart (stents are not approved for placement in veins anymore). The other patient did not die from the angioplasty itself but rather from a reaction to the blood thinner that was given to the patient after the procedure- therefore it was a drug reaction, not the fault of the actual procedure.
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bretzke
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PostPosted: Thu Sep 30, 2010 2:48 pm 
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Joan-

It appears Dr. Hubbard is on the board of directors: http://www.ccsvifoundation.org/our-work.php

Do you know either of the other two folks?

Thanks
Brian
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cheerleader
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PostPosted: Thu Sep 30, 2010 2:54 pm 
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OK...I had asked Dr. Hubbard about this group before...didn't realize it was the same one. Dr. Hubbard treated the woman who is heading up the foundation, and offered to help her organize in her area. He said she is a go-getter and for real. Sorry it didn't click at first...

I find it comical that Bob knows more CCSVI facts than a CCSVI "foundation." Bob...are you ready to come work for the Alliance?? :wink:
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


Last edited by cheerleader on Thu Sep 30, 2010 3:05 pm, edited 1 time in total.

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Lyon
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PostPosted: Thu Sep 30, 2010 3:03 pm 
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Last edited by Lyon on Sun Nov 20, 2011 6:09 pm, edited 1 time in total.

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whyRwehere
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PostPosted: Fri Oct 01, 2010 1:36 am 
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Is it really necessary to form another foundation?? I think she should just join your alliance, Joan, and leave the details to you as well.....
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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