The alleged research commitment by NMMSS

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

The alleged research commitment by NMMSS

Postby fogdweller » Thu Apr 29, 2010 5:12 pm

Lets put the alleged "serious" commitment by the National MS Society to researching CCSVI in perspectilve. Every time the issue comes up they tout the $185,000 they plan to commit to researching CCSVI as evidence of how seriously they are taking the issue.


$185,000 is a tiny, paltry amount for a single serious research project, much less a number of them.

The NMSS has annual revenue of $105,000,000. Count the zeros. They are dedicating less than 2/10 of 1% of their annual revenue to this important and potentially groundbreaking work.

Their CEO,President has an annual income of $409,615.00 In the time after they decided to commit research funds and the time the committee is schedluled to meet for the first time, she earned, all by herself, about double as much as the total they are committing to this research.

They planned to commit the money after a review by 5 international experts of proposals in May, 5 or 6 months after pressure from MS patients forced them to take a look at the most exciting new research angle in decades. They are still inexplicably reluctant. No idea how long the committee of 5 wil take to decide, wht budget they have if any to meet and work, how tiny they will parse up the individual grants, and how long the researcy and data analysis will take before the MS community actually learns anything.

Look at how much and how fast Buffalo was able to contribute to the CCSVI knowledge base all by themselves, because they were serious.

Lets not let the NMSS pretend that it is serious about pursuing this knowledge.
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Postby mangio » Thu Apr 29, 2010 5:26 pm

I received this info yesterday. The MS Society is hosting a fantastic
4 day get acquinted bash in Whistler in December this year.
At 400 a nite for most places in Whistler Village at that time of
year should be quite a hefty price tag for their ski get together.
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Postby nicko » Thu Apr 29, 2010 6:04 pm

mangio wrote:I received this info yesterday. The MS Society is hosting a fantastic
4 day get acquinted bash in Whistler in December this year.
At 400 a nite for most places in Whistler Village at that time of
year should be quite a hefty price tag for their ski get together.


Its so wonderful they can go skiing at our expense. I also find the amount they offer for CCSVI research completely pathetic. That amount wouldn't even hire two doctors. These societies really need a boycott so they shape up. CCSVI really shows their true colors. Myself.. I will never give them a cent again. I Also have told all my friends and family to do the same. After I tell them the details they are completely shocked.

Absolutely pathetic....
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Postby Rose2 » Thu Apr 29, 2010 6:56 pm

nicko,
ditto.
Rose
I know people who call me to tell me they are 'walking' for MS. I tell them Please DON'T. They are surprised until they hear my explanation and then they become angry and feel duped.
It is the nature to want to help like this, but when you know the facts it is unbearable.
Rose
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Postby MrSuccess » Thu Apr 29, 2010 11:00 pm

fog , we still do not know for sure just what exactly is going to be provided to those asking for funding. :?:

should your predictions come true ....and the MS Society fail to act in a manner CCSVI MS'ers wish .....I certainly would endorse a boycot of all and any MS Society funding efforts ....and would further suggest that such funding go directly to those organizations advancing the Big Idea. :idea:

I'm certain a few hundred emails to the MS Society informing them of what they can expect ....if they go small on CCSVI research.

Just an idea :idea: Money talks.




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Postby bestadmom » Fri Apr 30, 2010 4:56 am

Each grant the NMSS is giving for CCSVI research is supposedly$100,000. Considering the fact that my doctor's original study plans were for 800 patients at $8,000,000, you're looking at a cost of $10,000 per patient.

$100,000 is so insignificant, it isn't worth the time to fill out the application.
Last edited by bestadmom on Sat May 01, 2010 5:59 pm, edited 1 time in total.
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Postby belsadie » Fri Apr 30, 2010 4:57 am

I've just e mailed my MS society and informed them that I will not be contributing until they inform us of just how much $ and how long it will take to award it to CCSVI research. I also told them that I did not consider them an advocate for those of us with neurological symptoms indicative of a vascular problem [a.k.a. MS]
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Postby Cece » Fri Apr 30, 2010 7:54 am

I think the NMSS is an enormous organisation. Isn't a large part of their mission to bring together and provide support for people with m.s.? I think they truly saw/still see the CCSVI theory as a threat to people with m.s. False hopes, squandering money in pursuit of dangerous/ineffective treatment...we've heard it, maybe it's how they really feel. And with the drug companies whispering in their ear like Iago, they've gotten a slow start on this, but at least they're acknowledging CCSVI.

As more hard facts come in about CCSVI and the many pilot studies start bringing in results, I hope to see some very different things out of NMSS.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby fogdweller » Fri Apr 30, 2010 10:54 am

bestadmom wrote:According to the NMSS website, their 2008 income was $765,000,000, not $105,000,000. Only 17% of that revenue goes to research. Their overhead is tremendous.


If that is an accurate number, and if it comes off their web site, then they contribute 130,000,000 to research. And only 175,000 for CCSVI, less than .15% fo the research budget?

However I am not sure if those numbers include local MS societies, etc. I got my numbers from http://www.charitynavigator.org/index.c ... orgid=4189, an independent charity rating web site, but they were listing the public info published by from NMSS.


CeCe wrote:I think the NMSS is an enormous organisation. Isn't a large part of their mission to bring together and provide support for people with m.s.? I think they truly saw/still see the CCSVI theory as a threat to people with m.s. False hopes, squandering money in pursuit of dangerous/ineffective treatment...we've heard it, maybe it's how they really feel. And with the drug companies whispering in their ear like Iago, they've gotten a slow start on this, but at least they're acknowledging CCSVI.


I agree with this whole heartedly and don't think we should boycott NMSS activities. The NMSS does lots of stuff for pwMS other than research such as pulic awarenass, advocating for MSers for things like the ADA, providng equipment, etc., and we should not discount them altogether just because they just do not, in our opinion, adequately support the CCSVI research. I think she is also right that they see CCSVI as another unproven, bee sting or stem cell bogus treatment that potentially will prey on MSers, and their caustion is good intentioned even if we think it is wrong.

My point was only that we should not allow them to pretend that they are seriously supporting the effort to investigate CCSVI with their contribution. It is a laughably small amount. This is especially true if their RESEARCH budget alone is $130,000,000. (If that is the correct number, that is what we should use, not their overall revenue.)
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Postby Cece » Fri Apr 30, 2010 11:36 am

fogdweller wrote:My point was only that we should not allow them to pretend that they are seriously supporting the effort to investigate CCSVI with their contribution.


Ah, I totally agree with this. The cost of these studies is staggering.
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Postby AlmostClever » Fri Apr 30, 2010 12:50 pm

$100k won't even pay for the doctor.

What a choke..i mean joke!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby patientx » Fri Apr 30, 2010 1:31 pm

bestadmom wrote:According to the NMSS website, their 2008 income was $765,000,000, not $105,000,000. Only 17% of that revenue goes to research. Their overhead is tremendous.

Each grant they are giving for CCSVI research is supposedly$100,000. Considering the fact that my doctor's original study plans were for 800 patients at $8,000,000, you're looking at a cost of $10,000 per patient.

Do the math. $100,000 is so insignificant, it isn't worth the time to fill out the application.


Where are you getting these numbers? Is realistic that the NMSS had a revenue of 3/4 of a billion dollars in 2008?

According to the financial statement and annual report for 2008 available on the website, the home office revenue was $106.25 million for 2008. Of that 39.2% went to research (according to the graph on page 16 of the 2008 annual report). The actual amount going toward research grants was 34%, or $39.267 million. The 39.2% includes all expenses (telephone, supplies, etc, etc) associated with research.

The combined revenue for the home office and local chapters was $233.385 million, of which 18% went to research. The lower percentage makes sense, since the main mission of the local chapter is probably to provide services, moreso than the national office. The charts in the annual report seem to confirm this.
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Postby AlmostClever » Fri Apr 30, 2010 1:37 pm

Here's the BBB Charity Evaluation Webpage...

http://www.bbb.org/charity-reviews/nati ... ork-ny-597

Draw your own conclusions...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Squeakycat » Fri Apr 30, 2010 7:02 pm

Let the MS societies deal with MS and the CCSVI society deal with CCSVI.

It seems rather obvious that those who make their money OFF people who live WITH MS, are not interested in accelerating research in resolving a vascular problem.

They have become totally irrelevant to me. I have canceled my subscriptions and support and will put my money and efforts into supporting those interested in research on CCSVI treatment.
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Postby newlywed4ever » Fri Apr 30, 2010 8:50 pm

bestadmom wrote:According to the NMSS website, their 2008 income was $765,000,000, not $105,000,000. Only 17% of that revenue goes to research. Their overhead is tremendous.

Each grant they are giving for CCSVI research is supposedly$100,000. Considering the fact that my doctor's original study plans were for 800 patients at $8,000,000, you're looking at a cost of $10,000 per patient.

Do the math. $100,000 is so insignificant, it isn't worth the time to fill out the application.



Can I Quote you on my facebook page? I would stop the quote at CCSVI...$100,000. You stated it factually with great impact. Won't do it unless you say it's OK to re-post.
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