***URGENT MESSAGE RE: MSSC BOARD ELECTIONS***

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

***URGENT MESSAGE RE: MSSC BOARD ELECTIONS***

Postby Chrystal » Sun Jun 06, 2010 2:24 pm


***URGENT MESSAGE RE: MS SOCIETY OF CANADA - BOARD ELECTIONS***


June 7, 2010 deadline - Are you pleased with what the MS Society is doing to promote treatment and research on CCSVI? We are not.

If you come to the meeting, you can vote in Linda Molyneux and Brock Winterton as pro-ccsvi members yourselves!

If you aren't coming for the meeting, you have until tomorrow, June 7th to become a member (free to those with MS), and send your proxy to me!

Go to this site for all the forms. Janet Heisey MS Research Group www.blockedveinsMSresearchgroup.com

Meeting - Saturday, June 12th at 1:00 p.m.
Marriott Bloor-Yorkville Hotel
90 Bloor Street East, Toronto


Thank you!
Janet E. Heisey
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PLEASE FORWARD POSTING RE MSSC BOARD ELECTIONS

Postby Chrystal » Sun Jun 06, 2010 2:34 pm

Everyone,

PLEASE forward Janet Heisey's posting to fellow MSers who may not be aware of the upcoming MSSC Board Elections and the difference our vote/proxy vote can make - especially if they didn't receive any notice of the meeting from the MSSC, like me.

Thank you.
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Sickening

Postby Chrystal » Sun Jun 06, 2010 3:38 pm

As a member of the MSSC, did you receive notice of the meeting and Board Elections to take place? Did you receive an e-mail from MSSC Board Member Valerie Hussey? I never received either. For the first time in years, no notice of the meeting. No e-mail from Ms. Hussey for this member.

Read the quote below from a Board member (the full Montreal Gazette article of today is further below), in her efforts to block any CCSVI Representation on the Board, and maintain the status quo. The MSSC people are once again misrepresenting us. The Board member's characterization of us is completely inaccurate.

"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.”

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.”

PLEASE, get your proxy votes in or attend the meeting itself and vote to have your voice heard via Ms. Molyneux and Mr. Winterton.

NOTE TO MSSC: We just want a more balanced Board, with some representation. Surely, MSers should be equally and fairly represented.

Thank you.


http://www.montrealgazette.com/health/P ... story.html

Montreal Gazette
Promising MS treatment could divide advocacy group - Canwest News Service June 6, 2010 4:02 PM

Janet Heisey will spend $10,000 to fly from her Toronto home to Bulgaria next weekend for a treatment she hopes will halt the progress of her multiple sclerosis and prevent her from winding up in a wheelchair.

It’s a relatively minor, cheap and safe procedure — a balloon angioplasty to clear the blockage of veins carrying blood from the brain — but it’s one that MS sufferers like Heisey, 51, can’t pursue in Canada.

This “liberation therapy” is driving a wedge between the board of directors of the Multiple Sclerosis Society of Canada, who are urging for more research to examine the consequences of the treatment, and those, like Heisey, who say they simply don’t have “the luxury of time” to wait.

Heisey’s husband, Brock Winterton, and Linda Molyneux, whose son has MS, are running for two of the five spots up for grabs on the charity’s board of directors this Friday, with the intent of bringing the therapy to the forefront of the society’s agenda, if they’re elected.

Winterton and Heisey said there is little support among the board’s 13 current members for the treatment, citing a lack of information on chronic cerebrospinal venous insufficiency, or CCSVI, a condition that could be linked to the debilitating disease, the most common neurological ailment among young people in Canada.

The society has 28,000 members, but only a small percentage typically take part in board elections.

Should Winterton and Molyneux garner enough votes to join the board, their aim would be “to see the MS Society encouraging provincial health boards to allow people with informed consent to go head and have this kind of procedure,” said Winterton.

“The reality is that this discovery is the first time that there has ever been hope for MS sufferers,” said Heisey, who’s been diagnosed with the condition for 29 years.

“MS was, before now, an inescapable, slow decline.”

Employing balloon angioplasties in MS patients was first used in 2008 by the Italian vascular surgeon, Dr. Paolo Zamboni, who coined CCSVI.
His initial study found that 73 per cent of patients who underwent the procedure reported a decrease in the symptoms associated with MS.

The results are indeed promising, but the MS Society has maintained that more research needs to be done before it can recommend the treatment.

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.”

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.”

Winterton said he disagreed with the characterization in the e-mail.

“People with MS don’t have the luxury of time,” he said. “We’re not saying that this is a cure or a panacea, (we’re) just encouraging governments to allow this procedure to be done on the people who want it done.”
And Heisey is resolute in pursuing it.

“I’ve had it for 29 years,” she said.“There is no question in mind that I want to do this. I am a very informed consumer. I’ve researched the issue a lot and all I have to do is hear about the incredible success stories to want to try it, whether or not the results are positive or not.”

Heisey said she considers herself lucky that her condition isn’t worse after nearly three decades.

She said her right side is very weak. She’s unable to raise her right foot, and must use a cane to get around. Without treatment, she said, she’ll likely be in a wheelchair in a year’s time.

© Copyright (c) Canwest News Service
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Good Goin' Chrystal

Postby Hope66 » Sun Jun 06, 2010 5:49 pm

ttp://ca.linkedin.com/pub/valerie-hussey/6/49/91

I believe this is the Ontario Vice Chair's Linkinin site.

If this is indeed correct, I'm at a loss to explain/digest etc...how it is that a publisher of kid lit with a degree in English Lit somehow thinks she has the power to influence the direction of MS related diagnostics or treatment.

Wow.
Hope

PS, keep on keepin' on Chrystal...we'll get there eventually.
----------------------------------------------------------------------------
From Linkedin:

Current
consultant at Valerie Hussey Consulting
Past
CEO, President, Publisher at Kids Can Press (division of Corus Entertainment)
President, CEO, Publisher at Kids Can Press
Education
State University of New York at Buffalo
Connections
80 connections
Industry
Publishing

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

Valerie Hussey’s Summary
Extensive experience working with charitable, not-for-profit, and trade organizations at the Board level. Combines this experience with 30 years of business experience owning and operating an independent publishing company, Kids Can Press. KCP is Canada's largest, most successful publisher of books for children, with a significant international market. Successfully sold the company to a Canadian animation company, Nelvana, which was in turn acquired by Corus Entertainment. Remained President, CEO and Publisher of Kids Can Press as part of Corus Entertainment for six years.

Highly effective leader and facilitator of organizations through transitions. Strategic thinker who can help small and medium sized organizations identify their core capacities and build on them.

Valerie Hussey’s Specialties:
Idea generation; marketing, licensing, contract negotiations, Board governance and review, strategic planning, experientially based coaching.


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

Valerie Hussey’s Experience
consultant
Valerie Hussey Consulting
(Non-Profit Organization Management industry)

January 2007 — Present (3 years 6 months)

Focus on strategic planning, executive coaching and governance review to the charitable and not-for-profit sector, particularly where culture and the arts are the means of addressing social issues. Turn-arounds, and longer term assistance to small and medium sized organizations.

Arts for Children of Toronto; Sky Works Charitable Foundation; REEL CANADA; PEN Canada, JUMP Math.

CEO, President, Publisher
Kids Can Press (division of Corus Entertainment)
(Publishing industry)

2001 — 2006 (5 years )

President, CEO, Publisher
Kids Can Press
(Public Company; Publishing industry)

1979 — 2006 (27 years )



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

Valerie Hussey’s Education
State University of New York at Buffalo
BA English Literature , English, Education , 1971 — 1972


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

Valerie Hussey’s Contact Settings
Interested In:
consulting offers
expertise requests
reference requests
getting back in touch
-----------
Dx March 2003
Avonex
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Postby Chrystal » Sun Jun 06, 2010 6:23 pm

Hello Hope,

As you said, if this is the same individual, it not only boggles my mind, it infuriates me...the gall

You bring up a valid point, though. What are the qualifications of all the key people at the MSSC - all the ones with power and making decisions, recommending/advising against CCSVI - in each of the important areas - the top of course, disseminating/not disseminating info, montoring/not monitoring research news developments, allocating funds, etc., etc.... How do we see these bios, I wonder?

MS patients, in whose name and in whose illness the MSSC even exists, have every right to have fair CCSVI representation on this Board.

Take care and keep well, Hope. Thank you for sending this info.
Chrystal
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Postby Brightspot » Sun Jun 06, 2010 11:48 pm

Thanks Chrystal
This is an important chance to make some positive change.
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Postby Chrystal » Mon Jun 07, 2010 6:22 am

Just trying to keep this message at the top of the board while there is still time for MSers to send in their proxy vote. Thanks.
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Postby tazbo » Mon Jun 07, 2010 7:42 am

bump
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Postby Hockeydad » Mon Jun 07, 2010 7:46 am

I was informed of Janet Heisey's mission this morning. Coincidentally I was going to post about this as well. I have sent her my proxy.Good luck to us all. Thank-you Janet.
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Election

Postby PointsNorth » Mon Jun 07, 2010 10:34 am

I just sent my application for membership to the MS Society in BC by email and my proxy to Janet.

Eagerly await the results!!

PN
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Postby Chrystal » Mon Jun 07, 2010 11:55 am

Wonderful, thank you for sending in your proxy votes to Janet!

The MSSC Facebook Moderator, Rob, posted the following response to my posting...

http://www.facebook.com/MSSocietyCanada
Multiple Sclerosis Society of Canada Hello all,

The MS Society of Canada has been pro-actively inviting members and potential members to participate in the annual general meeting either in person or by way of proxy.

An example of this can be found in the Spring issue of MS Canada http://bit.ly/bvgGXC (Page 7). MS Canada is mailed to all members of the MS S...ociety of Canada, as well as selected libraries, clinics, and government offices.

Thanks,
-Rob

This was my response to him, because I am seriously concerned about the other Board members that they are so eager to re-elect, what CCSVI information they have/don't have, what their source of CCSVI information is (hopefully not MSSC-produced documents only) - after reading the quote from Valerie Hussey's e-mail to some MSSC members and "potential members" seeking their votes...

BTW, in the Spring Issue of MS Canada magazine, the

Hello Rob,

Thank you for your response. I did receive the Spring issue of MS Canada back in March or April, but in previous years I can recall also receiving a separate notice about the AGM, the agenda and a proxy form in the month/weeks prior to the AGM.

What I and many other MSers find absolutely objectionable and contrary to a Society supposedly representing all MS patients, is the e-mail message Ms. Hussey (Board Member) sent to some members and potential members, as quoted below in the Montreal Gazette...I never received her message and neither did some other members I have since heard from.

"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.”

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.”

In good conscience, how could this Board member try to block CCSVI representation on the Board, especially when the MSSC and its CCSVI spokespeople have been noted for regularly disseminating incorrect information about CCSVI, the study results, developments, etc. Where have the Board members been receiving their CCSVI information – from the MSSC solely? Have they been following all the news, developments and updates as rigidly as so many of us MSers have been doing – or have they been satisfied to read only MSSC-produced documents?

Were the recipients of V.H.’s message accurately informed of CCSVI, the differing equipment used in the Buffalo study that led to results differing from Dr. Zamboni, the uni0n of Phlebology Consensus Document, the hundreds of treatments being done worldwide resulting in wide-ranging and lasting improvements in patients’ health (“not the placebo effect”, as confirmed recently by one BC doctor who was amazed by patient’s improvements), the fact that the MSSC CEO has stated that he would prefer a pharmacological treatment (what does he have to say following the news about the MS drug treatments’ efficacy, or lack thereof?) for CCSVI rather than simple balloon angioplasty that is performed on non-MSers every day? Were all these people given accurate information about CCSVI in Ms. Hussey’s appeal to have them vote for current board members instead of “supporters of CCSVI”?

Were they informed of the parliamentary sub-committee hearings and statements made by Dr. McDonald, Dr. Haacke, patient witnesses who have been liberated and have experienced marked improvements? Were they informed that even on “compassionate grounds”, the MSSC, our advocate agency, said they would not appeal (and they did not appeal) to the Government for immediate CCSVI testing and treatment of MSers for whom pharmacological treatment is not available and for MSers in further stages of the disease – although the very compassionate Dr. Kirsty Duncan and Dr. Carolynn Bennett saw the urgent need to advocate on MSers’ behalf at the parliamentary hearings and in an open letter to the Health Minister? Dr. Zamboni, Dr. McDonald, Dr. Haacke and so many of our fellow MSers have pleaded, lobbied, petitioned and advocated for this. In compassion, these people and so many of us have been doing all of this for our fellow MSers (first and foremost and then the rest of us) for whom there has been no current treatment, even as our advocate agency repeatedly told us they couldn’t do anything. Nothing but appeal for money for research. And we cannot help but wonder what is on the real agenda - research into a pharmacological treatment of CCSVI???

As a great number of the patients the MSSC is supposed to represent, we want and are entitled to have our own representation on the Board – representation that we can count on to have accurate and timely information, and for a say that reflects the best interest of MS patients, based on such information.
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Postby tazbo » Mon Jun 07, 2010 12:23 pm

Thank-you Chrystal. I have a great deal of respect for the work so many caring folks like yourself put out for our collective benefit
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Postby Chrystal » Mon Jun 07, 2010 12:33 pm

Tazbo, thank you - you are so kind, but I really don't deserve this praise. The others, however, truly do deserve much gratitude and praise. There are so many MSers and non-MSers who have been consistently and continuously working round-the-clock on the CCSVI front.

Any steps forward that we have made, are due to the great efforts, caring and compassion of these wonderful people, and I will forever be grateful to them all.

Take care and keep well, Tazbo.
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VOTING - FYI

Postby Chrystal » Mon Jun 07, 2010 6:22 pm

A fellow MSer responded with the following two messages, to my posting of Janet Heisey's message re: getting proxy votes in before the upcoming AGM, in order to have our own two selected reps on the MSSC Board.

I was given permission to bring this to the attention of our two proposed reps, and to post it online for fellow MSer's info. in the hope that positive change will come about regarding this issue.

~~~~~~~~~~~~~~~~~~~~~~~~~~
June 7 at 12:23pm

I called the MS Society to see if I could vote by telephone. They did not know if I could or not & promised to get back to me before noon.

Otherwise I will not be able to vote because of mobility issues.

It certainly seems odd to me that the Society has not considered voting by telephone & I suggested they consider it in view of the membership.

I have voted by telephone proxy on AGMs for the last 20 years for all of my stockholdings & was astounded they did not have this facility.

~~~~~~~~~~~~~~~~~~~~~~~~~~

June 7 at 3:52pm

I did hear back from MSSC at about 1:00 pm today who confirmed that the proxy vote required a signature per the By-Laws.

The individual who responded also said they would table my motion but not when or how.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was as shocked as this person, that even in this day and age - the MSSC doesn't have such arrangements in place - considering the wide-ranging disabilities and mobility issues of MSers.

Another strong reason we need representation on the Board, to ensure that patients' interests are being regularly reviewed and met.
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Postby garyak » Mon Jun 07, 2010 6:36 pm

Chrystal it is shocking that you can't vote by phone. I can't believe i Didn't open this post earlier. It is 730 pm on monday so it is really too late to register and send a proxy tomorrow?
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