Announcement- CCSVI Alliance

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by bestadmom » Tue Mar 09, 2010 4:18 am

Mr. Success,

Your point is well-taken.

Although the Alliance is formed and the site is being built by the group of Tims members, our Board of Directors and Advisory Board satisfies the need for outside professional participation.

We are working directly with the medical community in the US who are inivolved in CCSVI research, diagnosis and treatment and the phone is ringing and the emails are coming from professionals looking to team up.

We've been quietly active behind the scenes to build the infrastructure that the group needs to be effective. Our goal is to do the right thing, in a professional way.


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Post by MaggieMae » Tue Mar 09, 2010 5:34 am

When I get discouraged I always hope to come to this forum and look for encouragment. Today is one of those days. Thanks all.

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Post by costumenastional » Tue Mar 09, 2010 5:39 am

I realize this is a group effort, still it would be a mistake not to mention that you are, i dare to say God sent Joan.

From where i stand, i really cant do much. However it would be a priviledge for me to help anyway i can.
I dont know if CCSVI applies to me yet, sure hope it does, but i know that many patients will experience relief of their symptoms to say the least.
If it wasnt for you this would probably have not been possible.

Meeting people like you makes me proud i am human.

Gongratulations Cheerleader. You are a woman of steel.

By the way, can you ask Jeff if he has ever used the FL Studio program for creating music? Since diagnosis i am taking some serious time doing just that and i can say that making music ROCKKKKSSS :)

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Post by tzootsi » Tue Mar 09, 2010 6:25 am

This is great news - another step towards getting CCSVI into mainstream medicine. Once my wife has the procedure done, we would love to help out.

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CCSVI Alliance

Post by jozee » Tue Mar 09, 2010 6:56 am

This group has empowered me to help myself.

Thankyou to all!!!


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Post by jenf » Tue Mar 09, 2010 7:44 am

This is fantastic news! Without the hard work and dedication from all of you, none of this would be possible. Less than two days from my own Liberation, I owe everything to the hard work and diligence put forth by the founding members of this group and the CCSVI movement (thank you Cheer). I realize you all have done the legwork already, but if there's anything I can do, please let me know.

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..

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Post by Yogi » Tue Mar 09, 2010 7:52 am

Well Done, congrats to all. Here is some additional info that you may or may not be aware of. I hope it is helpful. Bye4now, Yogi.

Yasmeen Sayeed. B.Sc, DHM, MBA

President & CEO

Surgical Tourism Canada Inc.

17425-64th avenue

Surrey. BC. V3S1Y8

Tel: 1-877-871-4315( Toll Free) , 604-575-4316

Fax: 778-574-7253



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CCSVI Alliance

Post by Ruthless67 » Tue Mar 09, 2010 8:02 am

Dear fledgling CCSVI Alliance,

Thank you to all involved in "birthing" this wonderful baby. It's taken quite a few dedicated mid-wives to get this done. She will make history and I feel privileged to be able to watch the delivery.

If it wasn't for all of you wonderful folks and your passion for getting the information about CCSVI accurate and straight forward the CCSVI message would not have carried so far so fast.

I’m indebted to all of Tims as well, I feel I’ve made friends here and have found commonality and understanding that surpasses the love and support of family and personal friends.

I now have a diagnosis of Congenitally Malformed Jugular Valves. Ya Hoo! I’m a candidate for the “Liberation Treatment”!!!!!

By winter of 2010 I fully expect to have warmer hands and feet and to have left the land of fog behind me!!!!

Thanks Tims member,

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Post by Waken » Tue Mar 09, 2010 8:14 am

Thanks to all invovled for your wonderful work. You don't know me but I feel I know everyone of you. I have been lurking at TIMS for years and have been excitedly reading all about CCSVI since December 2008 and was very much interested in Dr. Dake's work since I live in So. California. Based on what I learned here I was able to approach my neuro who was very open minded, dare I say excited, as he was never on the auto immunity bandwagon. If you ever have need for a business type person to do support work I would gladly help out.

Thanks again and rock on!

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Good Luck

Post by IMSum1good » Tue Mar 09, 2010 10:00 am



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Post by ozarkcanoer » Tue Mar 09, 2010 10:03 am

Ruthless... Fantastic news !!!


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Post by cheerleader » Tue Mar 09, 2010 11:30 am

Lora- Great news! (isn't it odd how malformed jugular veins can be considered a welcome diagnosis?)
Costume- Jeff uses Logic and protools for music programs. Glad you're rocking out!
Waken- business experience is appreciated. Send an e-mail thru the website
jenf and jozee....CCSVI Alliance is all about self-empowerment
The response since last night has been wonderful- thanks, everyone!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09

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Post by coach » Tue Mar 09, 2010 12:59 pm

Double congrats- on once again the tireless efforts of our beloved TIMS member and CCSVI "start he ball rolling gal" Joan. Also congrats Lora on your diagnosis (guess that is a tad strange to congratulate someone on a diagnosis, but hopefully this will allow you to move forward with treatment). Me thinks big pharma just might be a wee bit concerned. Want to help where I can. This can be so huge for so many MS sufferers. Guess we're not just going to go away.

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Those of us outside the USA. ?

Post by 1JFH1 » Tue Mar 09, 2010 4:55 pm

PCakes wrote:Congratulations and good luck!! Will the 'Alliance' be available to those of us outside the U.S. A. ? I will be a big fan regardless.. :)
Yes, congratulations! Are there similar 'Alliances' outside of the USA? Australasia, perhaps? I would do whatever I could to assist.

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Post by larmo » Tue Mar 09, 2010 7:25 pm

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 in September ?
Just curious, did this treatment exist before Dr. Zamboni's news ? If so, how come WE MS'ers never heard of it ?

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