The Hope Center for Neurological Disorders

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

The Hope Center for Neurological Disorders

Postby ozarkcanoer » Wed Dec 02, 2009 4:38 pm

As many of you already know, I have been communicating with the Administrative Director of the Hope Center for Neurological Disorders here in St Louis for sometime now. Today I received two very positive emails about CCSVI from him. Here is the text :

email #1 : (it's about the postponement of my trip to Detroit) and ("Mark" is the Director of the Hope Center and an MS and stroke researcher)

I’m sorry to hear that Jill. But they have been progressing very quickly with this work by scientific standards, and I’m sure they will be up and running again soon. So take heart and don’t let it undermine your enthusiasm.

By the by, thanks for the article from the journal of cerebral blood flow and metabolism. It’s a really good article.

I know I am overdue to give you an update on things here. In fact, I need to follow up myself. I know Mark has watched the documentary, talked to numerous people here and at other institutions about CCSVI, and read the papers you have sent. I also know he is really going to be following the progress of the clinical trial and is anxious to see how it turns out. You have successfully drawn a lot of attention to Zamboni’s work and CCSVI here at Wash U.

I will be trying to follow up with some of the people involved in the discussions around CCSVI here (I don’t know everyone involved at this point) and give you an update soon (as well as the long overdue short informational document that I keep having to amend for new information).

email #2 : (I had emailed him suggesting a seminar with Dr Zamboni)

Three of your emails to me ended up in my spam filter, including this one - which I very much wish I had seen before. Interdisciplinary meetings, scientific seminars, and such are very much a core part of the Hope Center and its purpose in a way that training someone in the Doppler ultrasound is not.

The reason the Doppler ultrasound proposal is more outside our area is because the Hope Center doesn't generally do clinical work. Since many of our investigators do clinical work in addition to the translational research they do with us, we have still been moving ahead and bringing the offer and idea to the attention of people who might implement it -- but it wouldn't actually be the Hope Center doing this work. Having a scientific meeting or seminar, on the other hand, to try to increase awareness among investigators, foster collaborations, and promote discussion on this new line of research is something I can maybe put into direct motion myself. Although I'll need approval from our steering committee and Mark first, I can seek that myself and if they give it I could start planning something.

Since this email was a while ago, may I ask if you are still interested in having Dr. Zamboni or some of these other experts visit and share their knowledge?

Am I interested ???? LOLOLOLOL

Info on the Hope Center :


The Hope Center for Neurological Disdorders :

Hope Happens... fundraising nonprofit for the Hope Center

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Postby magoo » Wed Dec 02, 2009 4:42 pm

Great Job OC!!!!!!
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sharon » Wed Dec 02, 2009 4:45 pm

Good work oc!!!!

Can we make reservations now for the seminar? :)

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