CCSVI Alliance

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

CCSVI Alliance

Postby cheerleader » Sun Jul 25, 2010 9:48 pm

Image

July 26, 2010

Dear MS Patient & Caregiver,

On February 16, 2010, CCSVI Alliance formed as a 501(c)(3) nonprofit and today we launched www.ccsvi.org for multiple sclerosis (MS)patients, caregivers, and medical professionals in order to learn about a new condition, Chronic Cerebrospinal Venous Insufficiency (CCSVI), that may be significantly related to MS. The site will be a resource for you to explore many aspects of CCSVI. It also will provide information to you to advocate for diagnosis and treatment of the condition, and to donate to
the cause of advancing CCSVI research.

The site explains diagnostic and treatment approaches to CCSVI, answers frequently asked questions, addresses myths, and provides a history and timeline of the relationship between CCSVI and MS. There are patients’ perspectives -- first-person accounts of what it’s like to be diagnosed and treated for CCSVI. The website is comprised of educational information at a basic and advanced level, including links to research papers and a glossary of common terms. There also is information about donating for
CCSVI research.

CCSVI Alliance began with the efforts of individuals who are intimately familiar with multiple sclerosis and CCSVI. Their levels of disability range from mild to severe. These individuals are committed to the exploration of the debilitating disease. MS patients and caregivers are demanding accessibility to the simple endovascular treatment while some in the medical community are advocating for a slow and cautious approach. CCSVI Alliance will work to build the bridge between these two disparate opinions.

Chronic Cerebrospinal Venous Insufficiency, a syndrome of the extracranial veins, is a new condition identified in 2008 by Italian vascular surgeon and researcher, Dr. Paolo Zamboni. Initial studies indicate a strong correlation with multiple sclerosis. Research is underway to test the CCSVI hypothesis and develop standardized treatment.

CCSVI Alliance is a 501(c)(3) nonprofit. CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of chronic cerebrospinal venous insufficiency. CCSVI Alliance will keep patients, caregivers and the medical community current with the latest research, emerging practices, and patient perspectives. The Alliance will attend conferences, speak with the medical and patient communities, help bring together patients and doctors, and connect medical professionals with one another. Please contact info@ccsvi.org if you’d like to volunteer.

Sincerely,

Sharon Richardson
President
 
CCSVI Alliance, Inc.

www.ccsvi.org
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Sun Jul 25, 2010 10:01 pm

Mr. Success endorses this organization .


Good Luck CCSVI Alliance







Mr. Success
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Postby flipflopper » Sun Jul 25, 2010 10:18 pm

MrSuccess wrote:Mr. Success endorses this organization .


Good Luck CCSVI Alliance


Mr. Success


Ditto!


I love it! Thanks for all the hard work! :D
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Postby Katie41 » Sun Jul 25, 2010 10:21 pm

Comprehensive, particularly user friendly, excellent info for those with MS, their caregivers, and their doctors (or their doctors to be LOL). You must be so pleased with the results of all your efforts. Thank you all for such an important resource.

Katie41
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Postby orion98665 » Sun Jul 25, 2010 11:03 pm

Excellent info and very informative. Money is coming your way!

Bob
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Postby costumenastional » Mon Jul 26, 2010 12:51 am

Thank you Cheer and everyone who made this happen. It going right on the top of my bookmarks.
I happen to know what a pain a site's development can be as i am working for my work's web site at the moment as the only administrator.
Please, continue to help anyway you can.
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Postby Pepe » Mon Jul 26, 2010 2:39 am

26th July, 2010: A date to remember in the future!

Hat off for your hard, great, excellent, superb... work!

Let´s drink a toast to all of you?

Cheers! Salud! Proischt! Salute! Santé! (Na) zdrowie!
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby TMrox » Mon Jul 26, 2010 3:15 am

Thanks for all your hard work into creating this hub for patients, caregivers and doctors. I love the video introduction by Dr Haacke.

It is important to give credibility to efforts like this, respected doctors like Dr Haacke, will help.

Well done!!!!!!!!!!!!

Rox
Last edited by TMrox on Mon Jul 26, 2010 5:18 am, edited 1 time in total.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby bretzke » Mon Jul 26, 2010 4:43 am

Finally!

An organization I can support...

Donation is on the way.

Brian
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Postby BooBear » Mon Jul 26, 2010 4:44 am

Awesome, Cheer!!!!
Three veins angioplastied.  One renewed life.  
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Postby willm » Mon Jul 26, 2010 4:59 am

Well done Cheerleader and a big THANKYOU for you and your team's hard work.
The "Gold Standard" resource in the advancement of CCSVI research and treatment.
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Postby MaggieMae » Mon Jul 26, 2010 5:37 am

Thank you to all involved for your hard work and giving so much of your time and talents.
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Postby bretzke » Mon Jul 26, 2010 6:03 am

In reviewing the "Living the Experience" and "Patient Q&A" pages of the website, I noticed multiple references to stent treatments.

A casual observer might think stenting for CCSVI is the recommended way to go. That is not the case.

CCSVI.org may want to look at changing the content of these pages to promote ballooning as the current recommended treatment.

The mention of stents plays into the naysayers bag of tricks.

Brian
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Postby Trish317 » Mon Jul 26, 2010 6:52 am

Fantastic! Thank you to everyone involved!
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Postby MS_HOPE » Mon Jul 26, 2010 7:52 am

July 26, 2010 - a historic day, indeed! The official unrolling of the CCSVI Alliance website along with the first U.S. CCSVI Symposium, in New York City. The Alliance's website is everything I'd hoped it would be: professional, informative, easy-to-navigate. A site I won't hesitate to send anyone to, whether s/he is a newly-diagnosed MS patient, a caregiver, or medical professional - even a neurologist who already "knows" all there is to know about MS! www.ccsvi.org is now hands-down THE place to go for CCSVI information, and there is no question about the good intentions of its founders. Kudos to all of you! I feel so blessed to have you working so hard and so well on behalf of the MS/CCSVI community. Many, many thanks!
CCSVI:  Making Sense of MS
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