MS Canada announces live web streaming event--CCSVI--

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

MS Canada announces live web streaming event--CCSVI--

Postby bohemianbill » Sat Mar 13, 2010 6:29 pm

MS Canada announces live CCSVI webcast

http://www.mssociety.ca/en/research/ccsviWebcast.htm

I have signed up and forwarded a few questions (see the following)

Wed. April 7, 2010, you need to register, I am sure you ALL have questions lets show OUR support for this MS Canada iniative. I just hope its not just window dressing especially a week before they kick off the biggest fund raiser of the year The MS Walk.

There seems to be confusion amongst various MS Chapters throughout the Country. Alberta seems to have taken the position that a contributor to various fund raising events sponsored by the MS Society can designate their contribution to CCSVI research. This will be done by checking off a box found on the donation form.

Question #1 is this the position of the MS Society of Canada as a rule

Question #2 If yes, how will these contributions be tracked and accounted for, who will receive this research funding?

Question #3, How much money was raised for research by MS Canada for the year 2009.

Question #4 How much money has been or is proposed to be spent on CCSVI Research by the MS Society for the year 2010.

Question #5 Does the MS Society support the various movements within Canada such as msliberation and ccsvictorycanada organizations of like minded concerned Canadian citizens in there quest to have testing of CCSVI by trained technicians (CCSVI protocols) made available to all Canadian MS patients.

Question #6 Does the MS Society support the efforts of like minded groups (as described above) when taking the initiative to organize/mobilize in an effort to Educate the disenfranchised of Canadian Society ( medical, political, general public) on all things CCSVI and the potential of it being a game changer in the treatment of MS.

BB
-keep the heat to the feet-


---------------------------------------------------------------------------------

Dear Bill,

Thank you for registering for our CCSVI and MS web streaming event. Closer to the day of the event, you will receive an e-mail with instructions on accessing the live web feed as well a reminder on how to submit your questions via Twitter.

Date: Wednesday, April 7, 2010
Time: 1:00pm - 3:00pm ET
Speakers: Yves Savoie, President & CEO, MS Society
Dr. Jock Murray, Founding Director Dalhousie MS Clinic
Karen Torrie-Racine, person with MS

Have another question you'd like to pre-submit for the webcast? Enter it here.

Please contact us (1-866-922-6065 and ask for "the webcast extension") if you have any concerns.






This e-mail is intended for Bill Larsh.
You have received this e-mail because you registered for the CCSVI and MS webcast.


© 2010 | Privacy Policy

Multiple Sclerosis Society of Canada, National Office
175 Bloor Street East, Suite 700, North Tower, Toronto, Ontario M4W 3R8
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Postby hope410 » Sun Mar 14, 2010 12:24 am

If I may say so, I think your 'questions' come across more as accusations than questions requiring real answers. I also am not sure how relevant most of them would be to the rest of the audience so they may not be chosen for that reason.

Also, you can get a lot of your answers in their annual report. They are a society and therefore much of that information is publically available.

I honestly don't know how they could realistically support testing for CCSVI of all MS patients when there hasn't been any objective research yet to confirm that treatment for CCSVI does anything for MS. We really can't (nor would we want) the MS Society going on every wild goose chase that doesn't have evidence to back it up.

I personally would rather they spent their money on funding trials to validate that we have CCSVI and that treatment of it positively affects our MS in some measurable way. I would also want them to spend their money to research better and safer treatments for CCSVI if we're found to have it. I wouldn't want them to support the funding of CCSVI testing of MSer's until it's been shown to be a causal effect of demyelination and we need them to fund research into it before they support all of us getting tested.
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Postby bohemianbill » Sun Mar 14, 2010 6:57 am

Hope great reply,

My opinion is that the MS Society is being pro active in answering CCSVI questions, my questions are just that mine. They are presented in the way I feel. Your conclusions are yours.

But feel free to get involved and sign up for the web cast and submit YOUR questions. Looking up financial reports may be a good source of information but it is not something easily done by most.

So you have a concern of the direction the MS Society is taking regarding CCSVI protocol! here's your chance fire away. Perhaps you will list your question so others do not waste there time duplicating the same thoughts.

Accusatory, skeptical you bet, I am tired of the snails pace in which the medical, governmental, and Societies of the world have treated the CCSVI hypothesis. There is a growing belief that MS patients are being discriminated against re CCSVI. Stenosis is stenosis! Test our people using the proper protocols developed by the Zamboni team. If they suffer from CCSVI than CORRECT it, MS be dammed.

Enjoy your day, and do not forget to set your clocks forward, spring is in the air:)

Keep the heat to the feet

BB
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Postby SoberSandy » Sun Mar 14, 2010 7:22 am

There has been a lot of research which has proven CCSVI is a medical condition which requires medical treatment.
The following is a direct quote from Dr. Tom Gilhooly of England:

“It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebologists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. They decided Professor Zamboni had established “proof of concept” for this new condition. The papers from Zamboni and most recently from Buffalo University in New York have also established that there is a definite association between CCSVI and MS. It has also been established that CCSVI is a congenital disorder and precedes the development of MS”

The medical treatment for CCSVI should be available in Canada just as someone with Cancer receives treatment for their medical condition. The question is, "Why is the government expecting disabled people to travel out of the country and pay for treatment for their medically proven condition?" This simple test and proven treatment must be made available in Canada!!

We are well past deciding if CCSVI is a medical condition which requires treatment.

Keep the questions going to the MS Society and the Government of Canada - especially the Minister of Health! What is being done is outragous, bordering on incompetence and discrimination. Denying people treatment for a medical condition - what is that?

Keep up the GREAT WORK Bill!
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Postby bohemianbill » Sun Mar 14, 2010 8:13 am

Sandy do you have the link for this statement by Dr Gihooly

It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebologists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. They decided Professor Zamboni had established “proof of concept” for this new condition. The papers from Zamboni and most recently from Buffalo University in New York have also established that there is a definite association between CCSVI and MS. It has also been established that CCSVI is a congenital disorder and precedes the development of MS”

Thank you for your support
FYI we a currently developing a web site that will allow us to focus our educational efforts at the community level. Education of the disenfranchised is the key to having CCSVI mainstreamed. Will keep you posted

BB

-keep the heat to the feet-
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Postby SoberSandy » Sun Mar 14, 2010 4:10 pm

Hi Bill: I sent you an email with the contact information you are asking for with a copy of the newsletter I took my direct quote from. Hope it helps. The web site designed to educate and help us educate others is a great idea. Yes indeed keep me posted - much appreciated. Sandy
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Postby Gordon » Sun Mar 14, 2010 4:29 pm

There address tells it all. The offices they rent (or OWN !!) are in one of the most expensive realestate areas in Canada. They all have pension plans and everything. We should claw it all back and put it right to treating CCSVI patients.

Calling a spade a spade, I will believe it when I see it. In my opion they have know all along at the highest levels. Evidence of CCSVO goes back Decades and the put 100K forward for research

Screw them

Had enough, pissed off you have know idea

me
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ha!

Postby Brightspot » Mon Mar 15, 2010 11:27 am

Don't know about any one else, but I do not consider the MS Society a source for non biased useful information on CCSVI. We have all been subjected to their very low key and negative statements in the media, and their continuous cautions and advice not to pursue getting tested, but to wait, wait, wait, and become more damaged with the passage of time. Most likely while they are having their live streaming event, I will be spending my time researching ways for those of us at high risk to get tested and treated and lobbying for testing and treatment in Canada.
I have wasted enough time waiting for the MS Society to start participating in these areas to no avail.[quote][/quote]
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Postby Brightspot » Sun Apr 04, 2010 12:00 pm

Am reconsidering, and think it may be important for people to ask why the MS Society world wide seems to be persisting with the bizarre position that there has not been sufficient research to merit the screening of MS patients. On April 2, I sent a letter asking for the MS Society to advocate for us all to have access to screening and treatment by vascular specialists. I sent links to all the research listed in the research thread of this forum. There were a couple of pages. I sent the letter by email to Deanna Groetzinger, National Vice President Government Relations and Policy for The Multiple Sclerosis Society of Canada. I asked her to send the links on to the MS Society medical advisory committee. I also suggested their medical advisory committee might benefit from input from vascular specialists. Seems obvious!?
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