CCSVI Alliance

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

Postby jilthepil » Mon Jul 26, 2010 6:36 pm

Been waiting for you guys to be up and running. Beautiful site with a great cast of board members. THANK YOU THANK YOU.
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CCSVI Alliance

Postby Shayk » Mon Jul 26, 2010 7:07 pm

Sharon and all Members of the CCSVI Alliance Board

Thanks so much for the terrific site and your passion and dedication to the "cause". :D

Given some of the forces at work in the U.S., coupled with the negativity of some and the lack of any leadership honestly pursuing CCSVI, I've been fearful that it might evolve into one of those dreaded "black holes" .

I fear no more and I sure hope those of you in New York (you too Cheer) are all celebrating. Great day all the way around.

The other "Sharon"
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Postby Sharon » Mon Jul 26, 2010 9:02 pm

A special posting to recognize the Patient Advisory Board ( PAB) of the CCSVI Alliance

The PAB is a group of dedicated, awesome people who have volunteered their time to the Alliance. Each one has spent a great deal of time lending their support to the Alliance Board. We have relied on them to connect with the MS patient community, to contribute their expertise to the website whether it be creatively or techinically, and to help with the important day to day tasks of monitoring the Alliance website.

Please look at the PAB list on the Alliance website http://tinyurl.com/2crx79p
Recognize their efforts ... you probably know most of these people from TIMS...send them a private message.

The Alliance Board is fortunate to be supported by this wonderful group of people.

THANK YOU PAB's!!

Sharon
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Postby LauraV » Mon Jul 26, 2010 9:12 pm

Congratulations to the Board of the CCSVI Alliance! and thanks for your hard work in setting up an organization that speaks for and advocates for persons with MS. This is a new beginning.

And now it's time for all of us MSers to do our part in spreading the word to other MSers and the people who love them that this is the organization that should be receiving their support and donations.

And I love the logo - opening veins and opening minds! Beautiful!

Thank you!
Laura
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Postby cheerleader » Tue Jul 27, 2010 10:42 am

Thanks to everyone for all of the support and feedback regarding the site.

http://www.ccsvi.org/

media@ccsvi.org for media related inquiries
treasurer@ccsvi.org for donation, funding, or other financial issues
sciencewriter@ccsvi.org for questions or comments on the research, science, and theory of CCSVI and its presentation on this site
webmaster@ccsvi.org to report a broken link or any problem encountered on the web site
info@ccsvi.org for all other communication

Since this group came together from relationships on this site--we appreciate your input. Thanks to Aaron and all of the TIMS volunteers for allowing truly independent discourse.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby IHateMS » Wed Jul 28, 2010 12:22 pm

is there a form email we could use to introduce physicians to the site?
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Postby sbr487 » Fri Jul 30, 2010 8:14 am

CCSVI Alliance folks,

I think now quite a bit of action is happening in this area. I was thinking if there is some way each of these Drs currently treating/studying can share info with each other. Is ccsvi alliance thinking of providing such a platform or connect to enable this?
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Postby cheerleader » Fri Jul 30, 2010 9:33 am

sbr487 wrote:CCSVI Alliance folks,

I think now quite a bit of action is happening in this area. I was thinking if there is some way each of these Drs currently treating/studying can share info with each other. Is ccsvi alliance thinking of providing such a platform or connect to enable this?


Part of our mission will be hosting symposiums/conferences (like the recent one held at SUNY Downstate) to allow the doctors to share research and interface with patients. We are also members of the Endovascular Forum, the online presence for IRs and endovascular doctors, where cases are shared and discussed by the doctors. This particular group of doctors is very open to collaboration (how refreshing!) and because interventional radiology is considered a new and burgeoning field, these doctors know each other and read each other's research.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby 1eye » Fri Jul 30, 2010 9:49 am

bretzke wrote:
The mention of stents plays into the naysayers bag of tricks.

Brian


The neigh-sayers have already worn that one out. Even if a stent had caused a death (which it didn't) the likelihood decreases every day. If any surgeon doing CCSVI treatment has not heard that chestnut by now. they haven't been paying attention.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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