Canadian persons with MS and membership to MS Society

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

Canadian persons with MS and membership to MS Society

Postby Brightspot » Thu Jan 06, 2011 10:06 pm

Just received a request to renew my membership to the MS Society of Canada.

While the organization is, in my opinion largely responsible for the fact that Canadians with MS cannot access vascular medical care in our own Country, I have decided to maintain membership.

I am hoping to have the opportunity in the future to vote as a member and help elect a board of directors which might actually represent persons with MS and act in our best interest.

The membership form states that if membership fee presents a financial hardship to send in the form without payment and that your membership will be maintained.

In the space allowed for payment, I made a brief note explaining that that I am unable to pay, as any disposable income I have will be used to fight for the rights of Canadians with MS to access vascular medical care in Canada.
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Postby Blaze » Fri Jan 07, 2011 4:42 am

Like you, Brightspot, I am continuing as a member of MS Canada. I fear if those of us who believe CCSVI should be pursued as an option leave the Society, CCSVI will be buried by them.

I have also written to MS Canada and advised them my donations, which I have made for over 25 years, are instead being directed to Dr. Haacke's research and to Angioplasty for All. I have asked friends who have donated to MSS in support of me to do the same.
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They are criminals

Postby Gordon » Fri Jan 07, 2011 8:06 am

Better to know your enemy I guess
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Postby thornyrose76 » Fri Jan 07, 2011 12:56 pm

It's your choice , I suppose , but not one that I would make.
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Postby esta » Sat Jan 08, 2011 12:02 pm

I chose to re-new through my local chapter, as I believe the money stays local that way, and helps out people with MS in many ways here. I am also entering the walk, but any sponsorship i get will also be encouraged to donate towards our local chapter only. i think we're cutting off our noses to spite our faces here by not garnering local support. the national society should get the message. NO MONEY to them, if we can help it. I am also a face to talk to about the procedire and I see this chapter gives out ALL information to new/old clients.

I, however would love to be proven wrong...I just felt this was a win/win so to speak.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Re: Canadian persons with MS and membership to MS Society

Postby jacksonsmommy » Wed Jan 12, 2011 9:11 pm

Brightspot wrote:In the space allowed for payment, I made a brief note explaining that that I am unable to pay, as any disposable income I have will be used to fight for the rights of Canadians with MS to access vascular medical care in Canada.


That is awesome!
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!
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MS Society Membership

Postby msrelly » Thu Jan 13, 2011 9:19 am

Hi All - thanks to all for this discussion topic.

Just to let you know: I am a member and volunteer in a local chapter. And yes, esta is correct: membership $ sent to a local chapter stay in the local chapter.

Membership is important because if you are a member, you have a say. You can vote at the AGM! Membership numbers also impact the amount of grant money the Chapter can potentially ask for and receive from the government.

In local Chapters, gaming grant money and any funds raised through membership goes to pay for things like: self-help groups, workshops, newsletters, hardship fund, exercise classes and so on. It also helps to fund community-based activities (like work with local governments and transit on accessibility issues, awareness campaigns etc).

And for many of the fundraising activities that take place throughout the province during the year, a good portion of that money stays in the community where it was raised.

thanks for listening - and if you decide membership is right for you, please support your local chapter.
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Postby 1eye » Thu Jan 13, 2011 9:54 am

Let's see. $25 per member, so if all pw'MS' gave them that, that would be... I don't agree with donations when there are better places to put disposable money, like CCSVI Alliance, Dr. Haacke's work, numerous clinical trials of CCSVI-related stuff, etc. I suppose it all competes with other humanitarian giving. MS Society has been there for me as a pw'MS', so I know there are people whose hearts are in the right place. I sure don't want them to cease to exist, but they need to stay out of politics. For now, this would send a message at the national level, some judicious donation-time decisions. I guess I might renew.
"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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Postby broomdancer » Fri Jan 14, 2011 6:46 am

Unfortunately the Canadian MSS has not done anything for my husband & I, except to ask us for money monthly, send us enough address labels to last us six lifetimes and nickles that I walked for in the past yrs.

I am sure there are people at the local level who are compassionate and understand the needs of MS patients but when 48% of the monies collected go to administration costs, it leaves a sour taste in my mouth. The society should have been aware of this procedure long before most of us and at least made a mention in their editorials but nothing, until the story broke.... doesnot leave me with a warm & fuzzy feeling. My friends and family feel the same.

So until the upper echelon who are responsible for these decisions, are removed, we are out...
Regards Diana
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Postby Blaze » Fri Jan 14, 2011 8:56 am

An analysis (in both English and French) by Christopher Alkenbreck regarding MS allocation of funds would be intriguing if the information he reveals weren't so frustrating and depressing.

Here's the link:

http://www.facebook.com/topic.php?uid=1 ... pic=654623

Christopher points out in one year, MS Canada spent $4,623,235 on advertising and promotions, $4,230,996 on office supplies, $7,739,009 on research, and $350,000 per year on CCSVI research.

What dos this say about priorities?
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