Chronische Cerebro-Spinale Veneuze Insufficiëntie

Ik heb t bericht van TIMS afgehaald. Er is al wat discussie over de achtergrond van deze oproep EN de zin en onzin om aan deze oproep te voldoen. Persoonlijk ben ik VOOR. Publieke druk is in mijn optiek positief.

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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

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. 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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CCSVI? ken ik nie

Helemaal mee eens Linda. We willen allemaal toch dat Dr. Dake doorgaat met onderzoek? Waarom zullen we dan niet onze stem laten horen? Hoe meer we roepen, des meer we gehoord worden. Als we stil zitten te zijn, worden we overgeslagen. Dat is niet fijn.

Dus, als je vindt dat Dr. Dake door moet gaan, stuur dan ajb die e-mail!

Willem

Ik heb een e-mail naar diverse mensen in Stanford gemaild om steun te betuigen aan dr. Dake om vooral zijn CCSVI-research te mogen voortzetten. Ik heb een component toegevoegd van Stanford kan een zeer belangrijke universiteit worden op het gebied van vasculair chirugie.

Ik denk zeker wel dat de eerste vijf brieven door hun worden gelezen, de rest zal voor kennisgeving worden aangenomen. Wat echter WEL van belang is dat hun mailbox uitpuilt van de mails. Dat maakt altijd indruk, meer indruk dan twee of drie zeer goed beargumenteerde verhandelingen dat het zo belangrijk is. Zo werkt het nu eenmaal.

Voor degenen die het willen kunnen onderstaande brief gebruiken om op te sturen.

>>>>>

De geadresseerden zijn:

'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'

Ik heb als titel meegegeven: Please endorse Dr. Dake research on CCSVI (treatment)

In de eerste zin van de e-mail kan je wat persoonlijke zaken inzetten. Als je mijn regel gebruikt dan gaarne de woorden die met HOOFDLETTERS zijn aangegeven vervangen.

Niet vergeten helemaal onderin nog je naam zetten. Ik heb daarbij nog mijn woonplaats en The Netherlands bij gezet.

>>>>>


Dear Ms Ann Margareth Arvin, Ms Rosanne Spector and
Dear Sirs Philip Pizzo, MD, Dr. John L.Hennessy, Dr. John Etchemendy, Harry B. Greenberg, Paul Costello, Jonathan Rabinovitz,

My name is XXXXX and I have Multiple Sclerosis. I was diagnosed MS in DATUM/JAAR, although I have got my first symptoms in DATUM/JAAR. Now I am LEEFTIJD years and my live is turned upside down twice.

Once when I heard of my diagnosis, the second one when I read about the findings of Dr. Zamboni and the research Dr. Dake was setting up.

My initial thought of the findings of Dr. Zamboni was: this is a positive major breakthrough; now we thinking out of the box and a lot of pieces of the puzzle of former research do come together, but we have to go still a long way.

When I heard about the direction Dr. Dake wanted to go as one of the few researchers, I honestly did not believe that just a few researchers wanted to do research in this CCSVI-field. This is a totally new angle to look to MS! I think every TRUE researcher in the vascular field should desperately want to do research on CCSVI.

Dr. Dake can make the Stanford University definitely on the map of THE vascular center of the world. Just if he can continue with this extremely important research on CCSVI (and probable treatment). And of course, also for the millions of people whom suffer of MS. They will remember his name and the university’s name as long as they live.

It is extremely important that these new insights should be investigated by a research team that can make a drastic change of approaching MS. Dr. Dake has already proven that he is more than average interested in this matter, together with his close relations with Dr. Zamboni, Dr. Dake IS the man to continue this research.

As a final point I want to mention: The off spin of this research that this can initiate is overwhelming. New stenting and/or dilatancy techniques, better MRV’s, new medicine of removing iron from the CNS, medicines for repairing myelin (one is right now underway, I have read).
And probably many more things I cannot think of right now.

I hope you can help us all by endorsing Dr. Dake in his research on CCSVI (and probable treatment) and the adjacent fields of interest.

With kind regards

Dank je wel, ik heb ze allen aangeschreven met de bestaande brief.