This Is MS Multiple Sclerosis Community: Knowledge & Support

[BooBear]

Malden, it are comments like yours that are nothing short of inflammatory.

If the CCSVI Alliance financial reports were already out and indicated that our beloved Cheerleader was making $250K a year as a director, you may have cause to question her positions on issues as potentially tied to financial gain. Maybe.

But you don't have that data. And yet you still make thinly veiled references (and not so thinly veiled) towards Joan's motivations. It's rude. It's inappropriate and it's libelous.

Joan put herself out there with the research, the advocacy and the Alliance. As you point out, she is "out there" publicly with her positions. What about you, Malden? Did you want to give us your full name so that we can determine what motivates you to be so against this concept?

Is there an annual report we can check on how you make your money?
Can we see your tax returns to see what non-profits you graciously donate to? Can we see if a European pharmaceutical company pays your salary?

No?

Then we shouldn't throw accusations at you on this board or any other, right? Because we don't have any data to support those accusations? Good idea.

Get it?

[blossom]

boobear, good questions, good points!!

[bestadmom]

FYI, board members and their families of US IRS approved nonprofits are forbidden from being compensated in any way, shape or form. It is illegal.

Joan has donated very very generously to the Alliance, and most likely without her altruism, hard work, warmth and caring which has motivated others to donate, the Alliance would not exist.

[concerned]

So, does CCSVI Alliance spend any money on an office, airfare, luncheons, etc. or do they just hand over all the money to universities doing studies?

If it's the latter than I see no problem at all.

[CCSVIhusband]

So, does CCSVI Alliance spend any money on an office, airfare, luncheons, etc. or do they just hand over all the money to universities doing studies?

If it's the latter than I see no problem at all.

You mean like the Canadian MS society who spends 49% of their money (actually I think it was more than that) ... on salaries, benefits and things like that?

ALL non-profits have offices, expenses, etc ... get over it.

[soapdiva884]

Malden, it are comments like yours that are nothing short of inflammatory.

If the CCSVI Alliance financial reports were already out and indicated that our beloved Cheerleader was making $250K a year as a director, you may have cause to question her positions on issues as potentially tied to financial gain. Maybe.

But you don't have that data. And yet you still make thinly veiled references (and not so thinly veiled) towards Joan's motivations. It's rude. It's inappropriate and it's libelous.

Joan put herself out there with the research, the advocacy and the Alliance. As you point out, she is "out there" publicly with her positions. What about you, Malden? Did you want to give us your full name so that we can determine what motivates you to be so against this concept?

Is there an annual report we can check on how you make your money?
Can we see your tax returns to see what non-profits you graciously donate to? Can we see if a European pharmaceutical company pays your salary?

No?

Then we shouldn't throw accusations at you on this board or any other, right? Because we don't have any data to support those accusations? Good idea.

Get it?

VERY nicely said!

[malden]

Founding CCSVI related non-profit organizations is very popular

Here are some more, beside CCSVI Alliance:

CCSVI Foundation:
http://www.ccsvifoundation.org/

http://www.thisisms.com/ftopicp-144734.html#144734

Davie Hubbard (VP)
Monica Mulcahy (CFO)
Amber Alstott (pinup)

Board of Directors

Ginger MacQueen
Diana Gordon
Dawn Skinner
Steve Garvie
Yvonne Andersen
Christopher Alkenbrack
Jeanine Baker
Patrick Farrell

The Hubbard Foundation, San Diego, CA
http://www.hubbardfoundation.org/index.html

[BooBear]

FYI, board members and their families of US IRS approved nonprofits are forbidden from being compensated in any way, shape or form. It is illegal.

Joan has donated very very generously to the Alliance, and most likely without her altruism, hard work, warmth and caring which has motivated others to donate, the Alliance would not exist.

Amen to that! Thank you for pointing out the US IRS regulations- as a finance professional, that should have sprung to mind right away but it didn't. You are correct, of course.

[BooBear]

So, does CCSVI Alliance spend any money on an office, airfare, luncheons, etc. or do they just hand over all the money to universities doing studies?

If it's the latter than I see no problem at all.

Every organization has overhead, so it is impossible to assume that 100% of every dollar goes to studies. That would mean that someone would have to donate travel, donate web server space, etc., which just isn't feasible.

Shouldn't bother most, though, if they are fine contributing to the NMSS. While the NMSS spent just shy of $36 million in research (including fellowships) in 2009, they spent $59 million on salaries the same year...including over $470K for its CEO.

Oh...and another $8 million for retirement and health care benefits for those employees.

And since you brought up travel, the NMSS spent $3.2 million on travel. Funny, with 53 "local" chapters. That's a lot of travel.

Oh, and there were 56 independent contractors paid over $100K each in 2009 for the NMSS.

All in all, the NMSS received over $229 million in 2009 and spent nearly $219 million of it...but don't worry. They "invested" that "extra" $10 million...including what they paid into their pension plan.

No wonder they could only swing a paltry $6 million into CCSVI research.

[bluesky63]

http://www.charitynavigator.org/index.c ... orgid=4189

http://www.charitynavigator.org/index.c ... rgid=11332

http://www.charitynavigator.org/index.c ... rgid=10907

http://www.charitynavigator.org/index.c ... orgid=5584

I am confused why Charity Navigator lists several independent MS chapters as separate charities with widely varying ratings. Don't they all inter-relate? Can individual chapters be bad or great financially?

Here is a link to NMSS financial reports:

http://www.nationalmssociety.org/about- ... index.aspx

[Vhoenecke]

I am very sorry Joan, I know all that your have done for us. I am very thankful to you and those of us that matter know you do not profit from all the work that you do. God Bless!!!

[malden]

...Shouldn't bother most, though, if they are fine contributing to the NMSS. While the NMSS spent just shy of $36 million in research (including fellowships) in 2009, they spent $59 million on salaries the same year...including over $470K for its CEO.

Oh...and another $8 million for retirement and health care benefits for those employees.

And since you brought up travel, the NMSS spent $3.2 million on travel. Funny, with 53 "local" chapters. That's a lot of travel.

Oh, and there were 56 independent contractors paid over $100K each in 2009 for the NMSS.

All in all, the NMSS received over $229 million in 2009 and spent nearly $219 million of it...but don't worry. They "invested" that "extra" $10 million...including what they paid into their pension plan.

No wonder they could only swing a paltry $6 million into CCSVI research.

Those numbers looks like a serious business is behind those charities.

[concerned]

I'm against all capitalist business, and all socialist business as well.

[BooBear]

Without business, there would be no jobs- let alone donations.

To address Malden's point about a "serious" business being behind the NMSS numbers, the point was missed. At the end of the day, more was spent in salaries at the NMSS than on research. To critique expenses related to the CCSVI Alliance while ignoring those spent at the NMSS is simply jaded.

We are ok with the CEO of the NMSS making nearly half a million dollars a year, right? Because let me tell you how executives would be treated at that level in the real world when those executives fail to execute on core objectives- they would be fired.

The NMSS states its mission plainly- to find a cure for this disease and to provide support services to those with MS. Whether we can call CCSVI a direct link to MS and the liberation treatment a cure at this point is questionable to some- which is precisely why more studies and data are needed. But the money allocated to CCSVI research is paltry compared with the money provided to medicinal research. Why would that be the case? Research is research- the medicinal research is also unproven, yet better funded. Odd, huh?

Evidence is mounting- quickly- that the liberation procedure does in fact help relieve symptoms if nothing else. Should't the NMSS serve as our advocate, then, and quickly determine (and advocate upon a positive determination) that the procedure should at least be part of a treatment plan (along with the various others that are advocated and promoted)?

Tysabri has been directly linked to deaths. That is an indisputable fact. Yet the CEO of the NMSS has not decried the use of that drug. Not at all.

So if the NMSS is a "serious business" (as opposed to the CCSVI Alliance, which is what I believe you were implying Malden), then treat it like one and get new management in place.

[Shayk]

BooBear

Thanks for these details on the NMSS finances. I wonder though where/how you arrived at this:

No wonder they could only swing a paltry $6 million into CCSVI research

I'm only familiar with a total of $2.4 million, which is a combined total of the U.S. and Canadian MS Societies support of CCSVI research.

Over $2.4 Million Committed to Support 7 Initial CCSVI Grants to Determine the Role of CCSVI (Venous Insufficiency) in MS Disease Process

$2.4 million is even more paltry....if it's accurate.

Thanks!

Sharon