This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Mon May 20, 2013 5:37 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 15 posts ] 
Author Message
 Post subject: CCSVI Alliance update
PostPosted: Wed Jun 23, 2010 3:12 pm 
Offline
Family Elder
User avatar

Joined: Sun Nov 07, 2004 4:00 pm
Posts: 1228
Location: Colorado
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


Top
 Profile  
 
 Post subject: cross posted
PostPosted: Wed Jun 23, 2010 3:57 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
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.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience


Top
 Profile  
 
 Post subject: Re: cross posted
PostPosted: Wed Jun 23, 2010 4:00 pm 
Offline
Family Elder
User avatar

Joined: Sat Sep 06, 2008 3:00 pm
Posts: 357
Location: Rhode Island
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/


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 4:08 pm 
Offline
Family Elder
User avatar

Joined: Wed Mar 17, 2010 4:00 pm
Posts: 2562
Location: Kanata, Ontario, Canada
See Dr.Sclafani's thread. We're talking about directed donations to him, not money for the Alliance (yet).

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 4:12 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
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


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 4:21 pm 
Offline
Family Elder
User avatar

Joined: Sat Sep 06, 2008 3:00 pm
Posts: 357
Location: Rhode Island
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.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 4:51 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
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---
Quote:
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
dual stents placed 5/09
CCSVI in MS


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 5:11 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8506
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.

_________________
"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


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 5:26 pm 
Offline
Family Member
User avatar

Joined: Tue Jun 15, 2010 3:00 pm
Posts: 45
but the alliance is not going help patients hook up with Dr.'s? Is that correct?


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 5:44 pm 
Offline
Family Member

Joined: Sun Dec 06, 2009 4:00 pm
Posts: 90
Location: Canada
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.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 6:05 pm 
Offline
Family Member
User avatar

Joined: Tue Jun 15, 2010 3:00 pm
Posts: 45
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.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 6:20 pm 
Offline
Family Member

Joined: Sun Dec 06, 2009 4:00 pm
Posts: 90
Location: Canada
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.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Jun 23, 2010 6:28 pm 
Offline
Family Elder
User avatar

Joined: Thu Oct 15, 2009 3:00 pm
Posts: 1273
Location: St. Louis, Missouri
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 !

ozarkcanoer


Top
 Profile  
 
 Post subject:
PostPosted: Thu Jun 24, 2010 10:02 am 
Offline
Family Elder
User avatar

Joined: Thu Jul 09, 2009 3:00 pm
Posts: 1274
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


Top
 Profile  
 
 Post subject:
PostPosted: Thu Jun 24, 2010 10:20 am 
Offline
Family Elder
User avatar

Joined: Sun Nov 07, 2004 4:00 pm
Posts: 1228
Location: Colorado
HP -

In answer to your question, as Cheer wrote:

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



Sharon


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 15 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. CCSVI Alliance Update

Sharon

7

1386

Sat Sep 25, 2010 9:39 pm

Ruthless67 View the latest post

There are no new unread posts for this topic. CCSVI Alliance

[ Go to pageGo to page: 1, 2, 3 ]

cheerleader

38

4622

Fri Jul 30, 2010 9:49 am

1eye View the latest post

There are no new unread posts for this topic. CCSVI 101--a new video by Dr. Siskin from CCSVI Alliance

cheerleader

4

1367

Tue Aug 23, 2011 9:16 am

cheerleader View the latest post

There are no new unread posts for this topic. Announcement- CCSVI Alliance

[ Go to pageGo to page: 1, 2, 3, 4 ]

cheerleader

45

10327

Sun Apr 18, 2010 6:10 pm

Rose2 View the latest post

There are no new unread posts for this topic. CCSVI Alliance gets some press!!

bestadmom

5

1179

Sun Aug 08, 2010 7:56 pm

blossom View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: