URGENT MESSAGE From Blocked Veins Research Group!

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

URGENT MESSAGE From Blocked Veins Research Group!

Postby Chrystal » Thu Jun 10, 2010 10:57 pm

"Decisions are made by those who show up."

The Annual General Meeting & Board Elections of the MS Society of Canada is this Saturday, June 12, in Toronto. YOU CAN ATTEND.

We will be there with a pro-CCSVI agenda. Come and VOTE for the pro-CCSVI agenda.



Saturday, June 12th, 2010

Marriott Hotel

90 Bloor Street East, just East of Yonge St. (right beside “The Bay”), Toronto

Memberships available from 12:00 Noon, the Meeting starts at 1:00 p.m.

Membership is free for MSers, $10 for all others.

Please show up and join the Liberation.

Janet Heisey (primary proxy holder)
Is a Toronto resident and mother of three teenagers. Janet is a long time member of the MS Society and was diagnosed with MS 29 years ago. She is actively seeking the MS Liberation treatment and expects to have to go outside Canada to get it.

Brian Light (back-up proxy holder)
Brian has had Primary Progressive Multiple Sclerosis symptoms for 12 years. His disease has advanced to the point where he is unable to work due to pain and fatigue and now uses a wheelchair. Before the progression of his MS, Brian was a successful magazine publisher for several decades. Brian underwent stem cell infusion in April of 2009 which provided some short-term relief. In January of this year, Brian had a CCSVI procedure which seems to have arrested the progress of his disease. Brian has three adult children and lives in Toronto with his wife of 26 years.

Linda Molyneux (Nominee for MS Society Board)
Linda Molyneux is the mother of four grown children. Two years ago, her 22-year old son was diagnosed with Relapsing-Remitting MS. She has encouraged her son to undergo the Liberation procedure even if it means travelling outside Canada. Linda has many years experience with one of Canada’s largest private charitable foundations and has worked in a leadership capacity with many not-for-profit organizations. At present, Linda is actively involved in raising funds for the CCSVI research initiative at St. Joseph’s Healthcare Hamilton.

Brock Winterton (Nominee for MS Society Board)
Brock was a research analyst for a major investment dealer with global reach for over 20 years. Subsequently, he ran the research department of an independent Canadian investment dealer with exposure in most major areas of the economy. Brock has a Chartered Financial Analyst designation. His past charitable activities include the experimental theatre community in Toronto and that National Ballet of Canada. He is the Convenor of the Board of Managers of his church. Brock Winterton is married to Janet Heisey.

For those who didn't read the recent article in:

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The following quote will explain why your vote is so necessary at this AGM. We need to ensure that we have a voice and representation on the Board, with our votes for Linda and Brock (from the Blocked Veins MS Research Group www.blockedveinsMSresearchgroup.com).

In an e-mail sent to society members Friday, Ontario board member Valerie Hussey wrote that “Dr. Zamboni’s claims needs a great deal of further research, something the MS Society supports.”[/color]

Hussey urged members to vote for the current board members up for re-election instead of “supporters of CCSVI (with) a desire to push a single agenda to the forefront of the Society. The MS Society functions on well balanced principles: support to people living with MS, and research to find a cure. If those who believe that CCSVI is a cure and should be the primary or only agenda for the MS Society are able to assume a strong position on the National Board, it could have very serious implications for MS research broadly and services to people with MS.”
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Voting - Membership Registration Form

Postby Chrystal » Thu Jun 10, 2010 11:09 pm

You must be a registered Member of the MSSC in order to vote at the AGM & Board Elections on Saturday.

I imagine the MSSC will have (hopefully) forms with them at the AGM, since Member registrations will be available at 12:00.

In case you wish to fill out a Membership Registration Form beforehand and bring it to the AGM, I was only able to locate a form on the Scarborough Chapter's page of the MSSC website. If this wouldn't be your nearest Chapter, please cross out Scarborough and write in the appropriate chapter.

On the www.mssociety.ca site, go to “Locate an Office Near You” on the right side of the page.

Scroll down and select “Ontario”

At the prompt to select an Ontario Chapter or Unit, scroll down and select “Scarborough”

On the left side of the Scarborough Chapter’s page, click on “Forms”

Then click on “Scarborough-Membership Form [1].pdf” and you will get the Membership Registration Form

https://msors.mssociety.ca/CATv2/PDFs/C ... FinalDraft[1].pdf
(not sure if this link will work here, it wouldn't work on Facebook sites.

Scarborough Membership: $10
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More about the AGM

Postby Chrystal » Thu Jun 10, 2010 11:40 pm

Brock Winterton and Linda Molyneux are write-ins for 2 of the 5 available board seats. Both Linda and Brock will make a 3 minute speech and provide a 1 page summary of their qualifications and ideas.

If people register at the meeting and become members, they will be able to vote for the members of the board.

The MS Society will have Price Waterhouse Coopers there to count ballots, to make all official.
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Postby Chrystal » Fri Jun 11, 2010 7:40 am

Trying to bump this thread to the top again. Posting a recent article about a new device that was tested on 27 patients, approved, and now being used in 10 hospitals, I was told yesterday.

Please do read this article in its entirety. It gives a very enlightening view of truly caring and compassionate spokespeople putting the interest of patient health first, and speaking positively about a new non-drug option that can help victims of the illness they repesent.

This article highlights the need to have our own caring and compassionate Members on the MSSC Board to ensure MSers' interests are being represented, addressed, and met.

http://www.ctv.ca/CTVNews/Health/201006 ... um-100608/

New device can suck out stroke-causing blood clots
CTV.ca News Staff
Date: Tue. Jun. 8 2010 4:08 PM ET

A tiny "vacuum cleaner" that can suck out blood clots before they cause a stroke might sound like science fiction, but Canadian researchers say such a device exists – and it works.

Already, 27 Calgary patients have been rescued from strokes by the device, Dr. Mayank Goyal told the Canadian Stroke Congress Tuesday afternoon.

The tool is called the Penumbra System of Continuous Aspiration Thrombectomy and it works by breaking down and gently sucking out stroke-causing blood clots, to open up blocked vessels.

If used within a few hours of an ischemic stroke – the most common kind of stroke -- the device can reverse the effects of the stroke by restoring blood flow to the brain, preventing permanent brain damage.

"This unique new procedure is really quite miraculous," Goyal, the director of the Seaman MR Research Centre at the University of Calgary says.

The clod-busting procedure is performed a bit like an angioplasty. It involves threading a tiny catheter in a blood vessel through the groin, which is then fed up to the neck.

Then, an even smaller catheter is threaded into the brain beside the clot. The clot is then vacuumed out.

The device is credited with saving the life of Shane Neufeld. The 36-year-old had a stroke when an artery in his neck became torn, leading to a blood clot.

He remembers developing a crushing headache after a hockey game, followed by blurry vision, and then collapsing, unable to move.

"Then 15 minutes later my wife comes down and she saw me. And she knew and she called the ambulance right away," he remembers.

Doctors used the device to remove the clot. One year later, Neufeld still has trouble with speech but is grateful to be alive.

"I might have been dead if they don't suck out the clot properly," he says. "I am getting better with my speech and it takes time but if they didn't suck out the clot properly I properly can't even talk."

Currently the best treatment for ischemic strokes is the clot-busting drug tPA, which must be administered within three hours of the onset of stroke to work.

"But that's a chemical reaction and that takes time. This Penumbra system goes inside and sucks the clot up," Canadian Stroke Network spokesperson Dr Antoine Hakim told CTV. "Instead of waiting for a drug to melt the clot, to bust it, you have a system to suck the clot out."

Goyal notes that if the clot is in one of the bigger blood vessels, tPA just doesn't do the job fast enough.

"Sometimes it takes an hour or over an hour. In most cases we have been able to get vessels open in 15-20 minutes [with the Penumbra system]," he said.

This new process might be able to help those patients who get to hospital more than three hours after a stroke.

But not every stroke can be treated with the device. Only really large strokes can be vacuumed out and the procedure would not work for the 20 per cent of strokes that are hemorrhagic strokes. As well, the procedure is not easy to perform.

"It requires years of training to be able to do this," says Goyal. "It places enormous demands on the interventionalist, on the imaging specialists, and on the emergency team that gets the patient to a designated stroke care facility. Teamwork is key for success."

Goyal says his team's recent research has helped tease out which types of strokes can be best treated with the device, noting that current medication treatments would still be used for those patients who aren't suitable for treatment with the device.

"This promising technique has the potential to curb many of the devastating effects of large strokes," says Heart and Stroke Foundation spokesperson Dr. Michael Hill.

"Patients may benefit in a number of ways including improved outcomes and improved quality of life."

According to the Heart and Stroke Foundation of Canada, more than 50,000 strokes occur in Canada each year, and of them more than 14,000 Canadians will die.

With a report from CTV's medical specialist Avis Favaro and producer Elizabeth St. Philip
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M S Society membership registration forms

Postby Brightspot » Fri Jun 11, 2010 9:24 am

Good luck witht the election!!

Perhaps someone who finds the MS Society registration form could photocopy or print out a whole pile in case people arrive at the meeting to discover they are not MS Society Members. Just a thought..

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Postby Brightspot » Sat Jun 12, 2010 12:15 am

The need for change is even more evident after today.

(So glad our advocate Dr. Freedman will recieve money from the MS Society to advance the cause of CCSVI!!)
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Postby Chrystal » Sat Jun 12, 2010 12:50 am

Hello Brightspot.

We must demand change now. Enough is enough. They are playing with our lives and have no right to continue holding our health hostage while they do years of studies which will no doubt produce insufficient results with the paltry sum they've offered up per study.

Absolutely sickening to see Dr. F's name under "Additional Personnel". This man who thought CCSVI was a "hoax", and made some other ridiculously absurd statements...actually applied for his own grant AND was also part of another grant to study CCSVI - a topic that had him practically foaming at the mouth when discussing it in interviews??? Why such keen interest? Why has he been allowed to be part of any CCSVI study??

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