This Is MS Multiple Sclerosis Community: Knowledge & Support

Ashton Embry has just published a report titled "What the MS Society of Canada Does Not Want You to Know About their Finances", and he has found not everything is as clear as it looks:

http://www.direct-ms.org/sites/default/ ... b%2011.pdf

A summary from the first page

First of all, it is important to realize that the Multiple Sclerosis Society of Canada
is not a single charity but rather is a conglomeration of eight separate, but not at
arm’s length, charities. These include the National Office charity and one charity
for each of the seven regions. There is also a Multiple Sclerosis Research
Foundation which can be considered part of the MSSC family of charities.
There are two sources of financial information for the charities which make up the
Multiple Sclerosis Society of Canada. One is the Annual Report which MSSC
makes available every year and the latest one is for the 2008-2009 fiscal year. It
provides combined financial information for all the MSSC charities. The other
source is the Registered Charity Information Returns which each MSSC charity
files each year with the Canadian Revenue Agency and which are accessible on
the CRA website. The latest ones are for 2008-2009.

The financial information provided by MSSC in their annual report is somewhat
distorted by the somewhat questionable accounting practice of not including all
their direct fund raising costs as part of their expenditures and subtracting the
same amount from their revenue. Such fund raising costs consume almost 45%
of their total revenue and thus their exclusion makes the spending habits of
MSSC look much rosier and responsible than they actually are.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Oh for gods sake give it a rest Dr. Embry.

Absurd. It must be easy for Embry to criticize the society when he probably has never even participated in their events and seen what impact they have on daily living. Indeed, they don't spend all their money on research because there are so many ways to help PwMS besides research.

I've volunteered with them in the past and brought so much joy and happiness by helping severely disabled people with clothing, food, and human contact. Their case workers are phenomenal and I've personally seen them help PwMS draw up wills, contact bank lenders, schedule doctor appointments, and other stuff that these people would otherwise not be able to do themselves. Not to mention the amount of local and national lobbying the society does on behalf of PwMS. They also have good support groups for those of us who need them in difficult times.

If the society were run by Embry it would only be researching the impact of ancient beans on today's diseases without contributing any substantial value to every day troubles we face carrying this disease.

I agree that they should be more curious about CCSVI, but to propose that they don't receive our donations is wildly ignorant.

That's all I have to say about that.

Absurd claims?...how about their absurd claim to want to "end MS?"...they should be putting a lot more money into CCSVI research....we know they have it...and they would still have tons to continue helping people with MS in their daily lives, etc. Here is something tangible that could actually be the way to "end MS" and they haven't seized upon it....instead they ask the government to put up $10 million dollars when they are sitting on it right now....that's absurd. I applaud Ashton Embry...way to go!

Ashton is a very smart guy and knows how to cut through the bull****
He will never give it a rest and is a tremendous advocate for pwMS. I'd like to see the MSSC attempt to defend Ashton's commentary. I've yet to see in print where he is ever way off base with any of his commentary regarding CCSVI.

According to the new party line, CCSVI docs aren't even looking at MS so why would the MS society fund research into it?

Also, there's no solid evidence that this "could actually be a way to "end MS"", so they might be thinking it's wise not to put all of their eggs into one basket.

How about 2 eggs in one basket instead of basically none!

Last May at our local MS walk our community of 60000 raised $80,000. I raised 1/4 of that myself ( not this year ) . To my dismay the MSSC sent 3 Alberta chapter execs to my hometown for the event. The 3 all flew in , stayed 2 nights in hotels and had meal expenses. Such a waste of our hard earned $.

many good things have happened since Dr. Zamboni's great discovery . One being ..... great attention is now focused on MS and the organization responsible for handling research funds dedicated to resolving the mystery of MS.

If Dr. Embry has exposed questionable financial expenditures ..... then I applaud his effort. Maybe the public embarrassment ..... will rectify the situation .

As much as I desire that the MS Society fund CCSVI research as quickly as possible ....... the reality is ......... CCSVI is a new idea .

And new ideas are often strenuously opposed .




Mr. Success

I suppose you were not paid 120.000 for your help, as the board of directors. And anyway it was you and those other volunteers who did the job

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Come on. The NMSS is a wonderful patient advocate group that has helped, in MANY ways, people with MS for many years. We can scrutinize almost any company and say so and so is overpaid, funding is not going to the right places, yada yada and probably bring up some legit concerns. I believe more money should be directed towards stem cell research and I may try to advocate for it but if the NMSC or NMSS chooses to keep the funding level as is I will put on my big boy pants on and deal with it because overall they offer a great resource for families and individuals dealing with MS. Of course I may have misinterpreted this comment but I found it interesting where Dr. Embry encouraged people to donate their money to charities: "If one wants to help persons with MS, then I suggest that contributions be made to charities that spend the majority of their funds on research and which want to see a CCSVI clinical trial happen as soon as possible." He wouldn't be talking about HIS agency would he?

the argument put forth by the above poster .... makes no sense .... and lacks understanding .

To compare the actions and decisions of the MS Society as comparable to '' almost any company '' is absurd.

The source of funding for the MS Society ..... comes from grass root donations . And therefore .... they [ the MS Society ] .... are accountable to those that are giving financial support to it.

The '' almost any company '' enterprises ....... are not funded as such .

Apples to Oranges .



Mr. Success

That is not nice to say about Dr. Embry!!!

Furthermore I do not believe this has anything to do with who gets how much or where this money and that money goes. What this is obviously about is NMSC not putting their full blown support behind CCSVI research which has been a contentious issue from the get go. By all means if that is your primary concern please feel free not to donate to the NMSS and instead send whatever you wish to agencies dedicated to studying the human venous system and its role in sustaining life on earth as we know it. However to attack an agency that has helped many of us through this difficult journey is pretty darn ridiculous.

While the MS Society offers help to MS sufferers and their famililes and does some advocacy work for MS sufferers, their research is supposed to be geared towards finding a cure and ending MS. To do that the Society must be open to ideas. I believe that MS has two components to it: autoimmune and vascular. The vascular component is not a new idea and it should be researched. Indeed, research into the vascular component should have been on-going for many years but it has, to all intents and purposes, been ignored. Myelin repair is another area of research that desperately needs attention. I applaud Dr. Embry for his advocacy and I appreciate his continued efforts to promote research into the vascular component of MS. I also think that the MS Society needs to take a breath and re-evaluate its objectives.