CCSVI Alliance

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

Postby cheerleader » Mon Jul 26, 2010 8:14 am

Thank you, everyone! It's a good day for MS/CCSVI research!

Most of our board is in New York today, participating in the symposium at SUNY Downstate. I'm the designated on-line presence for today, and am so happy to be able to finally introduce this site and organization to all.

Bretzke, many of the original people involved in the Alliance were tested and treated and Stanford, but the Alliance does not promote stents or any particular type of angioplasty. We promote education and patients working with local doctors. We also thank and appreciate the first patients treated--the pioneers in this effort. (And just to clarify, all Stanford patients were always ballooned prior to stenting.) There will be much to learn in the coming years regarding treatment, and the Alliance will be there to help document the shared knowledge and experience of the doctors involved. But I don't want this thread to devolve into debating treatment techniques. Each new doctor is bringing more knowledge to the table, as the treatment is being refined.

As far as donations, yes! Thank you!!! We appreciate every dollar that can be sent our way. We understand how much it means when patients and caregivers give us their support in the form of hard earned cash, and we do not take this responsibility lightly. We will be working hard with all of the doctors involved to facilitate more symposiums, public outreach and research. Every donation, no matter what size, is appreciated.

So, mouse around our page, learn all you can, and join us in opening veins and opening minds---

cheer/Joan/Alliance Board member
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby IHateMS » Mon Jul 26, 2010 8:44 am

congrats.
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Postby Hockeydad » Mon Jul 26, 2010 8:51 am

Is it just me or is anyone else getting a Windows error message when trying to access the site. Maybe my office internet protection is on steroids today :roll:
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby sbr487 » Mon Jul 26, 2010 9:05 am

Hockeydad wrote:Is it just me or is anyone else getting a Windows error message when trying to access the site. Maybe my office internet protection is on steroids today :roll:


tried with 2 browsers and they work fine. try googling ccsvi alliance and follow the link ... might help ...
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Postby Rokkit » Mon Jul 26, 2010 9:32 am

cheerleader wrote:Most of our board is in New York today, participating in the symposium at SUNY Downstate. I'm the designated on-line presence for today...

Great! Let the live blogging commence! :D
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Postby cheerleader » Mon Jul 26, 2010 9:45 am

Rokkit wrote:
cheerleader wrote:Most of our board is in New York today, participating in the symposium at SUNY Downstate. I'm the designated on-line presence for today...

Great! Let the live blogging commence! :D


Ha! I'm not there yet on the tweeting and blogging, Rokkit...but am learning (from my tech-savvy teenager)

You can follow us on Twitter at CCSVI_Alliance
and join up on Facebook here:
CCSVI Alliance on Facebook

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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ccsvi

Postby blossom » Mon Jul 26, 2010 9:47 am

thank you cheerleader and everyone else that worked so hard to make this happen!!!
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Postby prairiegirl » Mon Jul 26, 2010 10:01 am

cheerleader wrote: It's a good day for MS/CCSVI research!

Each new doctor is bringing more knowledge to the table, as the treatment is being refined.
cheer/Joan/Alliance Board member


It will be interesting to watch things unfold in the next while-- exciting times! Thanks to you and to so many others for your continued efforts towards finding more about the role of CCSVI in MS. :D
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Excellent Website

Postby MarkW » Mon Jul 26, 2010 10:02 am

Congratulations to all involved. You have created a balanced factual website with more than enough information for the simply curious or expert. I am sure you will be lampooned by extreme neuros and extreme CCSVIers but that's life.
Best wishes,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Mon Jul 26, 2010 10:03 am

The website looks great!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Re: Excellent Website

Postby cheerleader » Mon Jul 26, 2010 10:31 am

MarkW wrote:Congratulations to all involved. You have created a balanced factual website with more than enough information for the simply curious or expert. I am sure you will be lampooned by extreme neuros and extreme CCSVIers but that's life.
Best wishes,
MarkW


Thank you, Mark.
I don't know if we expect lampooning....but there may be push back. CCSVI Alliance is positioned to collaborate with the top doctors and researchers around the globe in neurology, interventional radiology, vascular surgery, and imaging. We will continue to advocate for people living with MS, not corporations living off MS. And yes, that's life :)
cheer
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 fernando » Mon Jul 26, 2010 11:41 am

Thank you all, dear Cheer.

How can I direct some doctors working here in Argentina and already into the CCSVI paradigm to join CCSVI Alliance to get the latest info??

Thanks again

Fernando
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Postby msgator » Mon Jul 26, 2010 12:18 pm

so exciting and so beautifully presented. I will redirect all friends and family who donate money to MS efforts in my honor to this site. Keep up the good work.

:)

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby Sharon » Mon Jul 26, 2010 3:00 pm

To Everyone,

I just had to take a moment to say THANK YOU! We appreciate all your comments, and your feedback on the website. Please, if you find anything which you think can be improved, let us know.

The support of the MS community in the past few months was been the motivation to keep us moving forward. The organization of the Alliance is a story within itself. We are seven very dedicated people who had a passion and a purpose to educate the MS community and to support the further exploration of CCSVI. We are from opposite ends of the country - we Skype, we call, we email. For me personally, this has truly been an amazing experience.

I have received private messages from many of you wondering why I was not on TIMS as much as before. Your concern has not gone unnoticed and I am sure you now understand the reason. As soon as I get back from Stanford for my one year anniversary follow-up, I will post an update to my "old" tracking thread.

Again, thank you for your patience and your support. Please know we are diligently working to keep you, the patient, informed and to also collaborate with the professional community to further the study of CCSVI.

Take care, and Be well,
Sharon
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Postby ozarkcanoer » Mon Jul 26, 2010 4:12 pm

Thank you cheer and Sharon and the whole CCSVI Alliance board. I wish you had been featured in the NYT article instead of the "reformed" MS Society :( . It has been such a pleasure to follow your lead on this board and on Facebook since last October. And you can count on me for the future. My (and my sister-in-law's) MStery party for BNAC raised $4350.00 !!! I wish I could be of more help to you.

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