CCSVI Alliance update

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

CCSVI Alliance update

Postby Sharon » Wed Jun 23, 2010 2:12 pm

Now is a good time to update everyone on the progress we are making at CCSVI Alliance. While currently all-volunteer, CCSVI Alliance is building a professional, nonprofit organization to help patients and medical professionals navigate the complex and ever-changing CCSVI landscape. We've been dealing with the necessary legal matters, building our website, and are working on our strategic plan for the short term and for the years to come. We are very excited to start publicly acting on our mission:
"CCSVI Alliance 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 (CCSVI)."

Our first, large undertaking has been to build an accurate, substantial website - - one that can be a key resource for patients and professionals. We have been spending time carefully developing and testing it. Thanks to the dedication of a group of volunteers, and the support of key medical professionals, we will be launching the CCSVI.org website in July. We can't wait to launch the site and have it become a trusted resource for people in the MS patient and medical communities, whether they be skeptics or supporters.

After the website launch, we will be turning our attention to the development of other projects consistent with our mission. We will be sure to include your perspective in those plans. What we can accomplish in the short term and what we can do in the future will depend on proper funding and expert guidance. We will post updates on the website regarding what we are working on and how we are funding the activities.

We appreciate the concern that many of you have voiced here at TIMS regarding recent events in the CCSVI arena. While there have been and will be bumps in the road, we will remain focused on educating people about CCSVI, advocating for ourselves- the MS patient community, and supporting medical professionals' explorations of CCSVI . CCSVI Alliance is pleased and honored to be at the forefront of this movement.

Look for our launch next month, and join us in opening veins, opening minds.

Sharon Richardson
President, Board of Directors
CCSVI Alliance
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cross posted

Postby 1eye » Wed Jun 23, 2010 2:57 pm

I need an email address to send my money to. I suggest we get John Robinson sorted before anything else. So is it you, Dr.S, or somebody you trust?

I have seen Holly referred to but I too am sure she doesn't want her email bombarded.

This is why need an email to send money to. CCSVI Alliance seems right and it is to be hoped trustworthy. All we need from them is what we have from Cece and an address for the fund to use instead of Holly's (unless she volunteers.) I propose someone (not me) go through and add up pledges and keep the Alliance honest. There will soon be real $ so it'll need a bank account.
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Re: cross posted

Postby Trish317 » Wed Jun 23, 2010 3:00 pm

1eye wrote:I need an email address to send my money to. I suggest we get John Robinson sorted before anything else. So is it you, Dr.S, or somebody you trust?

I have seen Holly referred to but I too am sure she doesn't want her email bombarded.

This is why need an email to send money to. CCSVI Alliance seems right and it is to be hoped trustworthy. All we need from them is what we have from Cece and an address for the fund to use instead of Holly's (unless she volunteers.) I propose someone (not me) go through and add up pledges and keep the Alliance honest. There will soon be real $ so it'll need a bank account.


The ability is already there to donate to CCSVI Alliance.
http://ccsvi.org/
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Postby 1eye » Wed Jun 23, 2010 3:08 pm

See Dr.Sclafani's thread. We're talking about directed donations to him, not money for the Alliance (yet).
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Postby Cece » Wed Jun 23, 2010 3:12 pm

Is there a way to donate to Dr. Sclafani (or one of the other doctors) specifically through CCSVI Alliance? Once there is, what percentage of that will go straight to the doctor and his research and what will necessarily be taken as part of the administrative overhead?

What I am understanding is that CCSVI Alliance has taken a lot of hard work that is to be commended. And it will take another month for it to be in place. If we gather pledges for Dr. Sclafani right now, when CCSVI Alliance is in place, we can re-contact the people who made those pledges so that they can fulfill the pledges to him through CCSVI Alliance?

1eye, bless your heart, I hope we can do something for John Robinson. He is as bad off as Barb was. It is amazing to be able to say WAS.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Trish317 » Wed Jun 23, 2010 3:21 pm

Cece wrote:Is there a way to donate to Dr. Sclafani (or one of the other doctors) specifically through CCSVI Alliance? Once there is, what percentage of that will go straight to the doctor and his research and what will necessarily be taken as part of the administrative overhead?

What I am understanding is that CCSVI Alliance has taken a lot of hard work that is to be commended. And it will take another month for it to be in place. If we gather pledges for Dr. Sclafani right now, when CCSVI Alliance is in place, we can re-contact the people who made those pledges so that they can fulfill the pledges to him through CCSVI Alliance?

1eye, bless your heart, I hope we can do something for John Robinson. He is as bad off as Barb was. It is amazing to be able to say WAS.


It doesn't look like there's currently a way to specify how a donation is used.
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Postby cheerleader » Wed Jun 23, 2010 3:51 pm

Hi all--
Thanks to CCSVI Alliance board president Sharon, for posting and letting everyone know our current status. Just to be clear, the Alliance will not be taking money directly to give to doctors. We will be providing links on our site to IRB approved studies, so that donors can give their money directly.

As Sharon said---
After the website launch, we will be turning our attention to the development of other projects consistent with our mission. We will be sure to include your perspective in those plans. What we can accomplish in the short term and what we can do in the future will depend on proper funding and expert guidance. We will post updates on the website regarding what we are working on and how we are funding the activities.


hope that clarifies the Alliance and our mission--we're getting closer everyday!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Wed Jun 23, 2010 4:11 pm

That answers my questions, Cheer, thank you. I figure we're all on the same team and I too am excited to see what CCSVI Alliance looks like when it's up.
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Postby 1hunter » Wed Jun 23, 2010 4:26 pm

but the alliance is not going help patients hook up with Dr.'s? Is that correct?
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Postby tazbo » Wed Jun 23, 2010 4:44 pm

Welcome ...You need to see your dr if you want to connect with another dr. Are you asking because you are curious? The alliance provides info about ccsvi. It is not a go between for treatment.
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Postby 1hunter » Wed Jun 23, 2010 5:05 pm

My Dr. never heard about it ... i explained it the best i could and printed some stuff out and sent it to him after, at my next appointment he told me that he read my papers and it is too new and unproven etc... I wouldnt mind getting treated where i live, but nobody knows about it here. It is very frustrating.
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Postby tazbo » Wed Jun 23, 2010 5:20 pm

You need to get a dr who is up to speed or at least open to ccsvi. There might be private clinics available like the ones in Poland and Bulgaria. Try local options first...and maybe look at a GP if a Neuro looks like a dead end. Lots more ideas if you read what's already posted. You will be your best researcher.
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Postby ozarkcanoer » Wed Jun 23, 2010 5:28 pm

Sharon and cheer and everyone on the CCSVI Alliance team,

Thank you for everything you are doing. I wish I had a time machine and could see 4 years into the future to see how this will all play out. I will certainly do what I can to help you. And I can't wait to see your website !

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Postby HappyPoet » Thu Jun 24, 2010 9:02 am

cheerleader wrote:Hi all--
Thanks to CCSVI Alliance board president Sharon, for posting and letting everyone know our current status. Just to be clear, the Alliance will not be taking money directly to give to doctors. We will be providing links on our site to IRB approved studies, so that donors can give their money directly.

Cheer, Sharon or anyone else affiliated with CCSVI Alliance,

Just to be clear, will CCSVI Alliance provide a link to Dr. Sclafani when the fund-raising effort for him is established?

Thanks,
~HP
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Postby Sharon » Thu Jun 24, 2010 9:20 am

HP -

In answer to your question, as Cheer wrote:

We will be providing links on our site to IRB approved studies, so that donors can give their money directly.



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