We Must Send a Message to Stanford: Support CCSVI Trial

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

We Must Send a Message to Stanford: Support CCSVI Trial

Postby SammyJo » Thu Jan 28, 2010 6:05 pm

The CCSVI trial at Stanford faces obstacles which may slow or even prevent it from launching. The problems have been discussed many times here, such as the neurology profession's resistance towards the CCSVI theory. This would be a tragedy, since Stanford is the only medical center that has any experience in the US so far with treatment.

It is time to make your voice heard on this critical frontline. Please write a message to the decision makers at Stanford, they need to know how important this is. Grant applications are due Feb 9th at NMSS, so we have little time.

Below you will find contact names, addresses and emails. Wonderful if you can do paper letters as well as emails. Send this to all your contacts so they can write too!

Here are some suggested points, but write whatever you feel is most important, or what you are most familiar with.

*Urge the Stanford School of Medicine to pursue research into venous obstruction, and the possible causal relationship to multiple sclerosis.

*Explain why this is important to you personally.

*Commend Stanford and Dr. Michael Dake, for being the first medical center in the US to treat venous obstruction in MS patients.

*Stanford is the logical leader for the next phase of research, since they have the experience.

*The National MS Society is standing ready to fund CCSVI research.

*University medical centers in the US Stony Brook, Georgetown University, Duke, Stanford and Univ. South Carolina are readying trial proposals.

*A report on the prevalence of venous obstruction in MS will arrive in February when Buffalo Jacobs Neurological Institute the first part of their blinded study on the correlation of CCSVI and MS.

*Any plans you have for donations to Stanford's CCSVI research.

*In a blinded, peer-reviewed study, Dr. Zamboni found a 100% correlation between Chronic Cerebrospinal Vascular Insufficiency (CCSVI) and MS. J Vasc Surg. 2009 Dec;50(6) http://www.ncbi.nlm.nih.gov/pubmed/19958985

*Correcting this condition using angioplasty or venous stents, Zamboni’s team saw favorable neurological outcomes in MS patients; a halt to relapses and progression, and in many cases (not all) lessened symptoms and restored function.

*The Italian Multiple Sclerosis Foundation has announced it will allocate up to $4.5 million to fund ongoing research into CCSVI.

*The Canadian MS Society is funding research centers as well, Univ. British Columbia, and McMaster/Hamilton.

*The International uni0n of Phlebology has officially classified CCSVI as a congenital vascular malformation, outlining official guidelines for diagnosis and treatment.


Emails:

Here are email addresses ready to copy/paste. You can see who the emails belong to in the address list.

philip.pizzo@stanford.edu; hennessy@stanford.edu; etch@stanford.edu; aarvin@stanford.edu; harry.greenberg@stanford.edu; paul.costello@stanford.edu; jrabin@stanford.edu; manishma@stanford.edu; mddake@stanford.edu

Addresses:

Philip Pizzo, MD
Dean of the School of Medicine
Alway Building, Room M-121,
300 Pasteur Drive
Stanford University

Stanford, California 94305
philip.pizzo@stanford.edu

Dr. Michael Dake
Chief of Interventional Radiology
Stanford University School Of Medicine
Falk Cardiovascular Research Center, 2nd Floor
300 Pastuer Drive
Stanford, California 94305
mddake@stanford.edu

Dr. John L. Hennessy
Office of the President
Building 10
Stanford University
Stanford, CA 94305-2061
hennessy@stanford.edu

Dr. John Etchemendy
Office of the Provost
Building 10
Stanford University
Stanford, CA 94305-2061
etch@stanford.edu


Martha H. Marsh
President and CEO
Stanford Hospital and Clinics
300 Pasteur Drive
Room H3200 Stanford, CA 94305

Ann Margaret Arvin
Vice Provost and Dean of Research
Building 10, Main Quad
Stanford, California 94305-2061
aarvin@stanford.edu

Harry B Greenberg
Senior Associate Dean for Research
Dean's Office, School of Medicine
Alway Bldg., M121
300 Pasteur Dr.
Stanford, California 94305-5119
harry.greenberg@stanford.edu

Paul Costello
Executive Director, Communication and Public Affairs
School of Medicine
555 Middlefield Road Bldg. 110
Menlo Park, California 94025
paul.costello@stanford.edu

Jonathan Rabinovitz
News Editor, editor of Medical Center Report
555 Middlefield Road
Menlo Park, CA 94025
jrabin@stanford.edu


Rosanne Spector
Stanford Medicine Editor
555 Middlefield Road
Menlo Park, CA 94025
Stanford Medicine Editor
manishma@stanford.edu


If you are going to discuss your donation plans, add

Laurel Price Jones
Associate Vice President for Medical Development and Alumni Affairs
2700 Sand Hill Road
Menlo Park, California 94025
lpj@stanford.edu

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    Last edited by SammyJo on Tue Feb 09, 2010 4:02 pm, edited 3 times in total.
    RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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    Postby Arcee » Thu Jan 28, 2010 6:22 pm

    Thanks for spreading the news. It's time for Stanford to hear how important its involvement is for all of us. They need to know that the work that has been done at Stanford, and that should be done at Stanford, is critical for the advancement of CCSVI diagnosis and treatment. While being a leader can have its risks, the positive outcomes for people and the University are unimaginable.
    diagnosed RR in spring '04
    1 stent placed in left jugular vein 7/15/09
    on and off Copaxone
    allergric to interferons and Tysabri
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    Postby CRHInv » Thu Jan 28, 2010 7:06 pm

    Letters in the box, emails sent. Let's hope this works!

    Thanks SammyJo and Arcee!
    dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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    Postby cheerleader » Thu Jan 28, 2010 7:18 pm

    Thanks for putting this together SJ. It's done....and long overdue.
    cheer
    Husband dx RRMS 3/07
    dx dual jugular vein stenosis (CCSVI) 4/09
    http://ccsviinms.blogspot.com
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    Postby bestadmom » Thu Jan 28, 2010 7:52 pm

    Done. I hope I shamed them into it.
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    Postby Sharon » Thu Jan 28, 2010 8:13 pm

    Thanks SJ for doing the work on getting this this letter campaign together. (Also, Arcee - thank you). My letters have been mailed. Let's hope the grassroots movement is a force to be reckon with!!

    Sharon
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    Postby Opera » Fri Jan 29, 2010 1:57 am

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    Postby Arcee » Fri Jan 29, 2010 4:54 am

    And if you know any alums, be sure to encourage them to write!
    diagnosed RR in spring '04
    1 stent placed in left jugular vein 7/15/09
    on and off Copaxone
    allergric to interferons and Tysabri
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    Postby gibbledygook » Fri Jan 29, 2010 5:36 am

    Does it matter if one writes out the same letter? I wrote to Pizzo a few days ago but I am very happy to post/email some more of the same out but this time not by hand!
    3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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    Postby javaneen » Fri Jan 29, 2010 7:24 am

    Thanks for putting this all together SJ - I will send my emails on 2/1
    javaneen
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    Postby Arcee » Fri Jan 29, 2010 9:22 am

    Sure, you can send the same letter to everyone. If someone wanted to spend the time and tailor it (more medical arguments, more about reputation, more about dollars, etc.) by the recipient, that would be great, but the same one would work just fine. (I sent the same letter.)

    And a good reminder that folks from all over the world should write in. Besides helping educate some of us in the use of fabulous new vocabulary words like "nugatory" :D , it's a good reminder to Stanford that their work matters everywhere and would be appreciated and remembered everywhere.
    diagnosed RR in spring '04
    1 stent placed in left jugular vein 7/15/09
    on and off Copaxone
    allergric to interferons and Tysabri
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    Letters

    Postby Bobbi » Fri Jan 29, 2010 9:35 am

    To my American friends ... I will start working on a Canadian letter to send out to Stanford. It is important to support the 'grass roots' of North Americian CCSVI.
    Thanks for organizing this campaign.
    Bobbi
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    Postby ozarkcanoer » Fri Jan 29, 2010 9:36 am

    SammyJo,

    I will send a letter on Feb 1st since my last name begins with "N". It is really difficult for me to understand why Stanford would NOT want to be involved in CCSVI research !!! Is this academic politics or what ??

    My letter will be from my heart and I hope these letters make a difference.

    ozarkcanoer
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    Postby magoo » Fri Jan 29, 2010 1:22 pm

    Letters sent and working on emails :) We must support Dr. Dake and this research!!!!
    Rhonda~
    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 Billmeik » Fri Jan 29, 2010 1:42 pm

    anybody know the backstory here? Are the animal studies still going on?
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