Announcement- CCSVI Alliance

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

Postby bestadmom » Tue Mar 09, 2010 8:33 pm

Hi Larmo,

Dr. Zamboni's paper came out in Dec. 08, and Jeff was treated in April 09. The Canadian tv show airing had nothing to do with our url registrations.

There are at least 10 other url's we registered over time, including ccsvi.us, all pointing to ccsvi.org. Launching CCSVI Alliance has been our long term goal for quite some time.
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Postby cheerleader » Tue Mar 09, 2010 9:16 pm

larmo wrote:Sounds great. I have one quick question. If the report on Dr. Zamboni was aired in November, why is it that you registered the domain name ccsvi.org in September ?
Just curious, did this treatment exist before Dr. Zamboni's news ? If so, how come WE MS'ers never heard of it ?


Hey Larmo-
Michelle's right, we were onto Dr. Zamboni's research at TIMS for a long time before CTV brought CCSVI into the public eye last November.

The original CCSVI thread started 12/16/08, right after Dr. Zamboni's CCSVI paper became available online.
http://www.thisisms.com/ftopict-6488.html
Our incredible researcher, dignan, posted that paper right away. Another long time member, twistedhelix, had been posting Dr. Zamboni's prior research for a couple of years. We'd been talking about the vascular connection to MS. (Search twistedhelix as author sometime to read his most thought-provoking and humorous posts. Miss you, Dom.)
The original CCSVI thread tells the whole story of how a group of us from TIMS got tested and treated at Stanford, how we connected with the doctors, and how CTV found out about all of this from our online conversations.
The CCSVI Alliance has been in the works for awhile. We took our time, to do this right. Hope that clears up the history for newcomers-
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Tue Mar 09, 2010 10:49 pm

Bestadmom , thanks for the explanation . I really like this concept and will wish you great success. Having all the CCSVI information in one spot will be terrific. Unless one has been following it from the beginning ....it can be confusing . Many well meaning but left field contibutions here at TIMS exhibit this problem. I probably hit one or two in that direction myself :wink:

As pointed out in my previous post [ I almost said last post and made a certain ex-sunday school teachers dream come true :P ] I see many super smart CCSVI MS people listed as founders ...but no medical researchers ....yet.



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Re: Announcement- CCSVI Alliance

Postby MSUK » Wed Mar 10, 2010 2:39 am

cheerleader wrote:Dear TIMS Community-

This post has been a long time coming. I am so glad -and relieved- to finally be able to officially tell you all about the professional organization that a group of us have been building: CCSVI Alliance.

CCSVI Alliance, Inc. 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 in the U.S.

This undertaking is the real deal: we had one of the U.S.’s best law firms (working pro bono) get us official 501c (3) status, and our Board of Directors and Advisory Board are filled with knowledgeable, experienced, well-connected and devoted people. We wanted to do this right- and we appreciate your patience while we got the group up and running.

Our organization consists of many TIMS members - - people who studied, debated and wrote about CCSVI from the beginning. We've been reaching out to the medical community, and getting ourselves and loved ones tested and treated. There are patients of Dr. Dake’s at Stanford- where the research first took off, people Dr. Haacke tested, patients who went through Buffalo for testing, and people who found, inspired, and were treated by Dr. Sclafani (and other doctors who currently are choosing to be quiet). We have had all the tests and procedures, read all the articles, and talked with all the experts. And now we want to make CCSVI accessible to more people.

Making the testing and treating of CCSVI a reality will take an enormous amount of effort over many years. There will be studies and trials, charges and counter charges, mistakes and learning. CCSVI Alliance is uniquely poised to foster the understanding and connections necessary to hasten and expand CCSVI efforts during this time.

We are continuously doing outreach to the medical community, and our connections to the doctors and researchers are our strong point. (We’ve surmounted the language barrier of medicalese!) The researchers and doctors trust our input - - we can inform them of the patient perspective and know how to help them. Testing and treating CCSVI on a large scale requires this kind of serious-minded collaboration.

We bring a lot of knowledge, passion, and empathy to this effort. Our website will be filled with original content that discusses CCSVI in both a basic and more in-depth way. While you may have some sense of the people actively involved from our online exchanges over the years (see the list at the end), the way we have collaboratively applied our personal and professional resources to this undertaking is unique.

Our efforts began on TIMS so I wanted you all to be the first to know. I became Cheerleader three years ago for Jeff. His MS diagnosis sent me searching online, as I tried to understand his new disease and how I could help him live with our new reality- day by day. Becoming a cheerleader for CCSVI has been an unforeseen and humbling experience for me and Jeff. Most encouraging has been witnessing the group effort behind this new organization: we have an amazingly dedicated and diverse group working hard behind the scenes- for no pay- just to take this research out into the world. (Paid professional staff is coming – like I said, this is the real deal.) Later this spring when we formally launch ccsvi.org- you'll find out about it on this site. I really think it will be a great resource for people interested in understanding CCSVI in a clear and even-handed way. We are looking forward to your being a part of it.

- Joan

CCSVI Alliance
Arcee
Bestadmom
Cheerleader
CRHInv
CureIous
EnjoyingTheRide
Javaneen
Jay123
Loobie
Magoo
Marcstck
Montana
MRhodes40
Needled
SammyJo
Sharon

and some significant others whose dedication is astounding!


Hi Joan,

Congratulations to all at the CCSVI Alliance.

I have added your details to the MSRC's CCSVI Organisations and Group page - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2957 . If you have a logo sorted out yet perhaps someone could email me it to add to your entry on the page?

squiffs
MSRC Webmaster
MS-UK - http://www.ms-uk.org/
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Postby sbr487 » Wed Mar 10, 2010 4:24 am

Cheer and team,

Congrats on reaching this milestone ... you have been missed a lot in tims recently and we now know why ...

My only comment (or rather a compliment) is that "CCSVI (without MS) xxx" is something I would have wished since I believe CCSVI will explain not just MS but myriad of MS like diseases whose cause is still unknown. That way, we are already thinking beyond MS horizon. [/b]
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Postby bestadmom » Wed Mar 10, 2010 6:25 am

Squiffy2,

Thank you for posting about us and including the link to our site.

As soon as we finish tweaking the logo, I'll send you a jpg. We are very close, so it will be finlized by the end of the week.

Michelle
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Postby MSUK » Wed Mar 10, 2010 7:31 am

Ok Michelle no worries :wink:
MS-UK - http://www.ms-uk.org/
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Postby larmo » Wed Mar 10, 2010 9:41 am

Thanks cheerleader, I knew it had to be something like that. :) Knowing that puts me even further behind the MS crowd.
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Postby capegirl » Wed Mar 10, 2010 1:24 pm

I posted this as a new topic first, must be a newbie:

It is great to hear that people are working so hard at organizing and supporting this very critical medical development, with numbers comes power. Congratulations to you all and keep working hard - it is people like me with MS who will benefit. Thank you. I am new to this site and Canadian but if there is anything I can do to help please let me know.

Liz
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Postby thisisalex » Wed Mar 10, 2010 2:10 pm

you guys are amazing, im glad i am here with you
please keep going!
:)
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CCSVI Alliance

Postby kenneb9 » Wed Mar 17, 2010 2:34 pm

Posted this about CCSVI Alliance on the web site CCSVI Locator

http://ccsvi-ms.ning.com/profiles/blog/list
Reposted by Ken Torbert (kenneb9)
From Chearleader (Joan Beal) TIMS Community
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Postby ms2009 » Wed Mar 17, 2010 2:49 pm

Thanks for the good news cheer leader.

I am interested to help extend the alliance in Canada. I expect that some people might be already doing so as you have been working silently for a while.

Let me know if I can be of any help.
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Postby dunkempt » Wed Mar 17, 2010 2:56 pm

Likewise - and I'm sure that's true for a lot of people from a lot of other countries too.

If there's a useful way for us to do that formally, let us know and we will be in touch.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby cheerleader » Wed Mar 17, 2010 3:57 pm

Thanks so much for the encouragement and offers for international alliances, we all appreciate the support! We're still hammering away at web content and other matters, but are moving along on schedule. Will be sure to let everyone know once we're officially up and running. Interested parties can send us e-mails thru the addresses listed at CCSVI.org.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Vonna » Wed Mar 17, 2010 4:41 pm

Just wanted to give my heartfelt thanks for everything you all are doing! Such dedication and commitment. :)
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