Our page member, Mama D--went to the "Erase MS" event in southern California.  Sponsored by heiress and philanthropist Nancy Davis, a woman living with MS, it is a roundtable event to discuss new research in MS.  It is headed up by Dr. Stephen Hauser, the editor of the Annals of Neurology and major detractor of CCSVI research.  Jeff and I live in southern California, and I have been trying, since 2009, to get a meeting with Ms. Davis....to no avail.  I explained this to Mama D---she had hoped to see me or CCSVI Alliance members at the event.  Here is her note on the Discussions Board involving the event, and CCSVI discussion....which kept coming up, much to the neurologists' dismay.

 "It was just my personal wish that you were there to shoot down some of the ramblings that went on. And this time Dr. Hauser took back seat and forced Dr. Howard Weiner to start by addressing CCSVI before any questions were posed by stating that it is "simply not true" and that "any temporary relief some patiens have felt is just a placebo effect"?!?!?! No explanation, no elaboration, no proof, just a laconic stament hoping to end the discussion before it could even begin.

Sadly for them, one of the panelists, country singer Clay Walker himself pwMS, kept bringing up the venal health through the whole hour putting Drs. Hauser and Weiner on the spot again and again. He said that he had MRV recently and his own veins have been found to be grossly obstructed, suggesting that, given the proven prevelence of CCSVI in pwMS, it is only logical to test every pwMs for vein malformation, then he asked Dr. Hauser does he test his MS patients for venous malformation. All red in face Dr. H just said: "No", and the lingering silence spoke volumes. Another panelist wMS David Osmond, asked Dr. Weiner: "Did you prove that relief is a placebo effect" and the answer was: "We think it is, because we know that MS can get better on its own."

Afterwards I came up to Ms. Davis and asked her if she thought of inviting representatives from the field of CCSVI like Dr. Dake (she did not know who that was !?!?!?), considering that they also had a psychiatrist, MRI specialist, and not only neurologists on the panel. She said that all of these doctors have done the research and are experts, to which I said: "Respectfully, I don't think so. They do not specialize in venal health and it woud be very beneficial for the audience to hear from those who are." And then she said: "I guess so."

Thanks, Mama D.....appreciate you going and giving us the report.  I'll get the info to CCSVI Alliance, and we can all make a concerted effort to get Ms. Davis information from vascular experts.  Perhaps now she'll listen.  And thanks to all of you who keep asking, "Have you heard about CCSVI?" in your own corners of the world.  YOU are making a difference.

Joan

 http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/thank-you-clay-walker-and-mama-d-/10150173231882211