Answering Accusations

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

Postby BooBear » Tue Nov 30, 2010 3:33 am

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?
Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

ccsvi

Postby blossom » Tue Nov 30, 2010 10:38 am

boobear, good questions, good points!!
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby bestadmom » Tue Nov 30, 2010 10:58 am

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.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby concerned » Tue Nov 30, 2010 11:45 am

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.
concerned
 

Postby CCSVIhusband » Tue Nov 30, 2010 11:47 am

concerned wrote: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.
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby soapdiva884 » Tue Nov 30, 2010 1:24 pm

BooBear wrote: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!
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Postby malden » Tue Nov 30, 2010 2:28 pm

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
malden
 

Postby BooBear » Wed Dec 01, 2010 12:13 pm

bestadmom wrote: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.
Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

Postby BooBear » Wed Dec 01, 2010 2:36 pm

concerned wrote: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.
Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

Postby bluesky63 » Wed Dec 01, 2010 7:28 pm

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
User avatar
bluesky63
Family Elder
 
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

Postby Vhoenecke » Wed Dec 01, 2010 8:59 pm

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!!!
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby malden » Thu Dec 02, 2010 12:38 am

BooBear wrote:...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.
malden
 

Postby concerned » Thu Dec 02, 2010 12:42 am

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

Postby BooBear » Thu Dec 02, 2010 6:15 am

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.
Three veins angioplastied.  One renewed life.  
User avatar
BooBear
Family Elder
 
Posts: 339
Joined: Mon Mar 01, 2010 4:00 pm
Location: Chicagoland

MS Societies Funding of CCSVI Research

Postby Shayk » Thu Dec 02, 2010 8:09 am

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
User avatar
Shayk
Family Elder
 
Posts: 777
Joined: Fri Feb 06, 2004 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service