CCSVI foundation???

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

CCSVI foundation???

Postby mshusband » Wed Apr 07, 2010 6:40 am

OK ... maybe I'm way out of line here ... but I just can't figure this out. Everyone (almost everyone) that posts in this board believes so deeply in CCSVI ... yet all that's out there is the "MS society"

WHY hasn't anyone started a CCSVI society or foundation or whatever you want to call it to promote this?

It's not hard to start one of these ... get it up and running ... and get the people therein in front of doctors and medical boards pushing for treatments, diagnosis, etc.

If enough money is taken away from the MS societies and diverted to CCSVI society ... we could really be onto something here.

I read a lot of people fired up about MS societies not listening ... well a CCSVI society could be promoting this directly. It could be run in a completely different way (not in bed with the drug-makers of the world) because there are no drug makers for this. It could be strictly a promotional tool, and a tracking tool, and a research tool.
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Postby sbr487 » Wed Apr 07, 2010 6:44 am

"CCSVI alliance"
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Postby mshusband » Wed Apr 07, 2010 6:52 am

I stand corrected ... can someone delete these posts?


How long has their organization been going? The website isn't up to par yet ...

What is their mission ... where are they going ... what have they done?
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Postby ozarkcanoer » Wed Apr 07, 2010 7:03 am

mshusband, CCSVI Alliance is in the works, founded by Joan Beal, cheerleader, and other early patients of Dr Dake. They ARE working on it !!

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What not take over the MS Societies ?

Postby MarkW » Wed Apr 07, 2010 7:33 am

Starting a new CCSVI alliance is laudable but will take lots of time and money. The MS Societies are likely to be charities so must be democratic. Get CCSVI people to stand for key posts and use this chatroom to promote them. I would start with the MS Society in Canada and Scotland if I was advising on such action.
Good luck,
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 mangio » Wed Apr 07, 2010 8:24 am

I support all efforts to further this cause but in reality the more
procedures completed with efficacy will really be the determining
factor for physicians I feel. Results speak louder than words.
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Postby cheerleader » Wed Apr 07, 2010 9:45 am

Here's the original announcement:
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

http://www.thisisms.com/ftopict-10580-c ... l+alliance

We had a board meeting last night, and are almost ready to go on line. This is taking awhile, because beginning a non for profit corporation is a lot of work, and making sure the Alliance is the definitive source on the internet is a priority. Stay tuned, this is worth the wait.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mshusband » Wed Apr 07, 2010 9:48 am

Cheer:

I'll do anything I can ... please let me know how to get involved.

I'm a semi-respectable person/businessman ... but I've been looking for this type of thing to get involved with if possible. PM me if you have any ideas for how I can help.
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Postby cheerleader » Wed Apr 07, 2010 9:51 am

Dear MS husband...and all others interested:
Please use the CCSVI.org website address and send an e-mail to the Info division (link at the bottom of our page) We are collecting names and areas of expertise for volunteers. We'll have the complete site up soon. Thanks so much for any and all help. I promise you will not be disappointed-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby WeWillBeatMS » Wed Apr 07, 2010 10:23 am

Joan,

Can I just say that YOU ROCK?

I'm not waiting for your reply...

YOU ROCK!!!!!!!!!!

thank you on behalf of myself, my family and so many others who don't even know about CCSVI yet but will soon because of your hard work and diligence with this whole thing.

faith, hope & love
<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>
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Postby bestadmom » Sun May 02, 2010 6:27 pm

reposted from the donations sticky:

CCSVI Alliance now has a paypal donation button! We are a 501c3 non-for-profit US corporation. Our web site is getting close, and we can use any and all donations to get up and running. We'll have more fundraising info in the near future, but for those who want to help out on the ground floor, come to:

http://ccsvi.org/
and click on the donate button.

Thanks!!
cheer
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CCSVI ALLIANCE

Postby Montana » Mon May 03, 2010 6:44 pm

The CCSVI ALLIANCE has evolved organically through the selfless volunteer efforts of some impressively talented people. It has not had deep pockets to fund the development process, but when their website (CCSVI.org) goes up it will be formidable and reliable. You will refer your friends and physicians to it with pride.

With our financial help, they have plans for outreach efforts that will spread CCSVI tentacles across the country and make a difference for us all. I have sent my donation and I hope you will too.

Go to http://ccsvi.org/ and click on the donate button. You can use Paypal if you wish and deduct it on your taxes.
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Postby Ruthless67 » Mon May 03, 2010 9:30 pm

Hi all,

With my donation to the CCSVI Alliance I know that at this point in time, during it's growth period, that 100% of my donation will be going to further 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.

Now that's exciting,

Good work CCSVI Alliance!

Lora


Ps, if you read this thread and feel the same, make your donation then bump this thread so it goes back to the top. Thanks!!
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Postby Ruthless67 » Tue May 04, 2010 8:38 pm

*********bump************
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Postby sbr487 » Tue May 04, 2010 8:43 pm

bump
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