How your money is being wasted:

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

How your money is being wasted:

Postby 1eye » Fri Apr 08, 2011 5:59 am

I found this in my in-box just now. What it has to do with the federal election I know already, but I'm not sure they remembered to tell me.

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Dear friends and supporters,
Thank you very much for supporting MS Society of Canada efforts on behalf of people affected by MS across the country. People with MS are at the heart of everything we do, and it is a great pleasure to let you know the progress that is being made and to highlight what can be done further during the federal election campaign.
Questions about whether narrowed veins – also called CCSVI - are associated with MS and whether opening those veins can help people with MS have not been answered conclusively. Therefore, we were pleased on March 23 when – responding to requests from the MS Society – the federal minister of health announced a new monitoring system for MS. Once in place, it will track Canadians living with MS, including those who have chosen to have the CCSVI procedure abroad, and will capture information to help identify disease patterns and long-term outcomes.
There has also been progress on the work we are doing to improve income supports for people with MS and their families. MS is an expensive disease. In addition, many people living with MS are no longer able to work. Family members who are caregivers often have to cut back on their own jobs or quit working altogether to provide needed care. We are very pleased that both the Conservatives and Liberals, during the last session of Parliament, promised changes to permit spouses to claim a tax credit for being a caregiver. These are small steps, but they are important stepping stones on the way to greater recognition and support of caregivers.
As the federal election campaign develops, we will send you email messages occasionally to invite you to contact the candidates in your riding about issues of importance to people affected by MS. Please take action when you receive the email invitation.
If you would like more information about CCSVI, please visit our new online resource dedicated to this topic. For more information about caregiver needs, please see The Cost of Caring: Implications for family caregivers, and for more information on other income security issues, please visit our website.
Thank you,
Yves Savoie
President and Chief Executive Officer
P.S. To help end MS, please consider making a donation.
If you do not wish to receive information about MS Society advocacy campaigns, please unsubscribe. This will not remove you from other MS Society lists.
Multiple Sclerosis Society of Canada
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Multiple Sclerosis Society of Canada, National Office
175 Bloor Street East, Suite 700, North Tower,
Toronto, Ontario M4W 3R8

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Maybe it's time somebody started spamming them back. Anybody know how?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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1eye
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Postby jackiejay » Fri Apr 08, 2011 6:04 am

does anyone know Yves' email address?.....
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Postby Blaze » Fri Apr 08, 2011 6:36 am

jackiejay wrote:does anyone know Yves' email address?.....


yves.savoie@mssociety.ca

Good Luck. I hope you have better luck than I did. I sent Yves an e-mail last September. No reply. Not even an acknowledgment.

Here's my e-mail:

I have read your "unfiltered" letter of September 10. As someone who has had MS for 26 years and has tested positive for CCSVI with Dr. Sandy McDonald, I am disappointed and outraged at the position of the MS Society on CCSVI.

I fail to understand how MS Canada could ask the federal government for $10 million to fund clinical trials then serve on the very panel that voted unanimously to deny trials. I fail to understand why the MS Society snubbed Dr. Mark Haacke in granting of research funds. I fail to understand how donations from myself and others could have been used to write to all Ontario MPPs and advise them to NOT fund CCSVI treatment. I fail to understand why 48% of your funds are allocated to administration and fundraising. I fail to understand why MS Canada seems to have no interest in speaking to and learning from the experiences of Dr. Sandy McDonald, his staff and patients. I fail to understand why and I others should be forced to spend thousands of dollars to travel outside of Canada for treatment. I fail to understand how the organization to which I have belonged (including previously serving on my local Board) for over two decades could be so out of touch with its members and their needs.

What I do understand is why I and my family and friends are no longer donating to the MS Society. What I do understand is those funds instead are being directed to Dr. Haacke's research and to Angioplasty for All's Charter Challenge.

A few months ago, you called the MS Society of Canada "a house divided." That is the one thing we agree on.
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