Announcement- CCSVI Alliance

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

Announcement- CCSVI Alliance

Postby cheerleader » Mon Mar 08, 2010 7:40 pm

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!
Last edited by cheerleader on Mon Mar 08, 2010 8:00 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Mon Mar 08, 2010 7:48 pm

Outstanding !!! How can I get involved ?

ozarkcanoer
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Postby kenneb9 » Mon Mar 08, 2010 7:54 pm

The perfect time and the perfect thought
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Postby cheerleader » Mon Mar 08, 2010 7:58 pm

ozarkcanoer wrote:Outstanding !!! How can I get involved ?

ozarkcanoer


You know we need you, OC!
There will be more info coming, as to how we can all can get involved. This first group were the original pioneers (we've been cooking this up for awhile), but there's room for everyone. As things progress, we'll keep you all informed as to how to help. We'll need all hands on deck!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Fnatastic news!

Postby Brightspot » Mon Mar 08, 2010 8:08 pm

Fantastic news! Thank you for all of your hard work and coordination. We are truly living in an age of miracles and wonder. Thanks for your contribution!
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We are here to offer our help!

Postby bmunkres » Mon Mar 08, 2010 8:09 pm

Hi CCSVI Assoc. !!!! thank you all - please check the URL CCSVI-Forum.org and .com would love to find a home for them...?

ben@ccsvi-forum.org

Be well,

Ben
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Great news!!!!

Postby girlgeek33 » Mon Mar 08, 2010 8:11 pm

Cheer et all... Thank you! Thank you! Thank you!!!!!!

This is awesome! I may not be in a position to do much at this point in time, but I hope soon, I will be healthy enough to get involved more! And that will come to the thanks of all of you for keeping the information flowing!!!! For now, I will post a link to this on my 33 B.R.A.T.S. FB page...

We are so honored to have people like all of you care so much for those you love that it extends to the rest of us!!!!!
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Postby hopeful2 » Mon Mar 08, 2010 8:37 pm

Thank-you for putting together the CCSVI Alliance, Joan. I've been trying to keep up with CCSVI developments since January here and on FB, and this is great news!

I posted once that the paradign shift we're witnessing is so big that it won't be easily accepted. A non-profit 501 (c)3 could really help us with advocacy for research, trials, testing, and treatment to move things along.

Count me in for helping out. I'm in the SF Bay Area, diagnosed in '88, deal with various symptoms especially fatigue---but have learned to pace myself so I can be helpful in 3-hour segments. Then I nap!

Thanks again, Joan.

Patrice
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Postby cheerleader » Mon Mar 08, 2010 9:10 pm

hopeful2 wrote:Thank-you for putting together the CCSVI Alliance, Joan. I've been trying to keep up with CCSVI developments since January here and on FB, and this is great news!

I posted once that the paradign shift we're witnessing is so big that it won't be easily accepted. A non-profit 501 (c)3 could really help us with advocacy for research, trials, testing, and treatment to move things along.

Count me in for helping out. I'm in the SF Bay Area, diagnosed in '88, deal with various symptoms especially fatigue---but have learned to pace myself so I can be helpful in 3-hour segments. Then I nap!

Thanks again, Joan.

Patrice


thanks, Patrice...but honestly, this is a group effort. There has been so much work behind the scenes, and it's been carried out by the people listed at the end of the announcement. I'm just the messenger - working with an incredible ensemble of talented and motivated people. They were the ones that insisted on the 501(c)3 status and doing this the right way. I'm sure we'll need your help...whatever time you can spare. The great thing about working together is many hands make light work :)

To sign up and let us know of your interest, go to ccsvi.org and send us an e-mail- to the appropriate dept.
thanks!

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Mon Mar 08, 2010 9:51 pm

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.. :)
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announcement-ccsvi alliance

Postby simone » Mon Mar 08, 2010 10:12 pm

You continue to be amazing! Your sober sticking to the facts, clarity , dedication and compassion is so appreciated by many .
I hope to be of help sometime soon when the fog lifts or even before.

Many thanks to you All for your persistence .

simone
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Postby flipflopper » Mon Mar 08, 2010 10:50 pm

That's great! I’m very happy to read this :D
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Postby MrSuccess » Mon Mar 08, 2010 11:35 pm

good luck with your CCSVI Alliance organization.

You list some very well informed and CCSVI savvy people .....but no actual CCSVI - MS medical professionals . Or did I read this wrong ?

Come the day I read all of the CCSVI doctors have joined together under one big umbrella .....then I'll get excited.

It appears MS Societies are making moves to get the CCSVI message out there when the time is right.

Again , good luck ....




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Great News.

Postby msscooter » Tue Mar 09, 2010 12:04 am

Well I'm very pleased. can't tell you how much. i knew this was the way to go. now we don't have to re-invent the wheel. I'll be very grateful to use your materials and fundraise for this group as we get the sf bay area group together. you have saved us so much effort and time. THANK YOU!!! We will work hard for the funds needed and will walk ( or crawl) the right halls seeking out the right people to speak to to get CCSVI screening and treatment to become standard in MS work-ups. It's basic medical ethics. it's simple.
carol
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Postby lucky125 » Tue Mar 09, 2010 5:16 am

I can't wait to jump in with both feet! Of course I mean that figuratively. I haven't been able to jump in years :wink:

Cheer, you are a force of nature. Right now there are hundreds of us in your debt for bringing CCSVI to the US. Soon it will be hundreds of thousands!

I hope you are standing with him, or are at least sitting in the front row when Dr. Zamboni wins his well deserved Nobel Prize one day.

Our future has never looked brighter!

Thank you and all of the pioneers!
Last edited by lucky125 on Tue Mar 09, 2010 5:32 am, edited 1 time in total.
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