Answering Accusations

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

Postby VeeBee » Thu Dec 02, 2010 8:51 am

I think the key point is results.

MSSociety have a track record of making of putting business decions that conflict with patients. It's not entirely their employees fault and many want positive results as much as the rest of us but the profiteers (senior staff, feeder companies,etc) put their bottom line first & this directly conflicts with health issues.

Nothing is based on results if you're considering patient care.

CCSVI alliance, although an intended solution only feed the problem as they're already being lead up the garden path by wallopers intent on extending their own business interests at the expense of results (for PWMS). They are an advocacy group but clearly clueless when it comes to online SEO & that is where a huge % of their audience lies & where they could overtake MSSociety.

Example

http://ccsvialliance.org/index.php?opti ... Itemid=107

should be

http://ccsvialliance.org/science-advisory-board/


<meta name="keywords" content="CCSVI, Multiple Sclerosis...blah,blah, disaster"

should be "science advisory board"

These are assuming proper keyword research has been done, which it hasn't.

Are h tags being used? b? I? repetition?

Anchor text "CCSVI alliance US"?


"Our aim is to provide MS patients, caregivers, and medical professionals with a definitive resource for learning"

Sounds good but pointless if no-one sees it.

Currently CCSVIalliance need others to believe that they are first class advocates but fall at the first technical hurdle.

Offline is for conference sales & business deals and sure it will get the cash flowing in but for who? How effective? Are the donations being used efficiently? Is joans generous donations being pissed up against a wall?

This isn't an attack on alliance (who do offer good info), im just wondering if anyone in the organisation has considered efficiency & if they think they're worthy of requesting donations?

"Our aim is to provide MS patients, caregivers, and medical professionals with a definitive resource for learning."

Some of you already know my opinion on MS charities so I'll stop here.
"There's a difference between us. You think the people of this country exist to provide you with position. I think your position exists to provide those people with freedom."

William Wallace (Braveheart) on CCSVI/MS medical Nobles
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Postby VeeBee » Thu Dec 02, 2010 8:55 am

PS before I get attacked by the faithful, that was a large donation
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Re: MS Societies Funding of CCSVI Research

Postby BooBear » Thu Dec 02, 2010 9:06 am

Shayk wrote: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


I misspoke with the $6MM- you are correct at the $2.4MM number.

The NMSS spent more in lobbying than in the CCSVI trials they funded.
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Postby Cece » Thu Dec 02, 2010 9:13 am

I don't know anything about keywords or search engine optimization but maybe those are suggestions that could be taken and used.

Still it is easier to tear down than to build up. A lot of work has gone into building up CCSVI Alliance. They've got a professional website, informative videos with CCSVI researchers, many connections and talented people pitching in, and the good intention of helping pwCCSVI. Let's not tear them down.

I would not consider myself "one of the faithful" because I use my mind too thank you very much ;) but I will disclose that I am assisting CCSVI Alliance to a small degree with their Patient Perspectives page. Mitch's story is currently up, it can be found here:
http://tinyurl.com/357hwzy
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Postby BooBear » Thu Dec 02, 2010 9:16 am

VeeBee wrote:"Our aim is to provide MS patients, caregivers, and medical professionals with a definitive resource for learning"

Sounds good but pointless if no-one sees it.

Currently CCSVIalliance need others to believe that they are first class advocates but fall at the first technical hurdle.



VeeBee, very good points on the technical aspect. But keep in mind that the Alliance is new- and formed from a group of patients and caregivers- without the resources of the larger MS charities.

CCSVI Alliance would probably welcome your insight into how they can get their message out there more effectively. As you rightly point out, they do have good info on their site.

Also impressive is that they post links on where one can make donations directly to the organizations hosting CCSVI trials if desired. That allows the contributor to choose to donate to the Alliance, one or more of the centers hosting trials, etc., as desired. That has merit, but no one is mentioning that simple aspect.

Really don't think other charities or MS associations advocate (much less give links and how-to-donate instructions) donations to anyone other than themselves.
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Postby cheerleader » Thu Dec 02, 2010 9:25 am

Veronica-
CCSVI Alliance has only been up and running online since July. We are working on the links and improving hits. Believe me, there is much more in store. We have volunteer professionals working with us in fields of fundraising, design, PR, scientific advice and strategic planning etc. We are a work in progress.

I began this thread to deal with accusations that I was making money from this volunteer endeavor. I hope that has been clarified and we can move on.
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Postby bluesky63 » Thu Dec 02, 2010 9:35 am

Boo Bear, I don't know if you looked thoroughly at the links I posted, but I would be interested in your take on the specific documents on the NMSS site. I am also still left wondering about the overall financial question my searching gave me: it seems they are free to crunch their financial data different ways. They can consolidate *all* national data, or they can use only the central office and let each chapter be its own individual franchise. What does this imply to us as the ultimate "owners" of this "business"?

To go back to the corporate analogy, I don't mean to be inflammatory, and I am not the first person to have this idea, but in the companies I worked for the top people would just be replaced by management who were in line with the wishes of the shareholders.

And in this economy, it's a little hard to justify a $400,000 plus salary when so many people with MS are so destitute. As I look through the financial statements I am picturing Sylvia Lawry and her brother and how the whole NMSS began. Mind you I am deeply, incredibly grateful for all the wonderful people involved in it, and my own local chapter is fantastic, but sometimes the machine can get bigger than its driver.

Edit -- Sorry if this info I have posted is a sidetrack -- I think what has struck me more than anything is the difference between the massive machine of the worldwide MS fundraising efforts and the personal efforts that I have seen from people like Cheerleader. Perhaps that's exactly how Sylvia Lawry began. Cheerleader, I will quit posting in this thread now and end by saying a huge thank you for your efforts, which have had a direct positive effect on my family's life, which in turn ripples out. Thank you. :-)
Last edited by bluesky63 on Thu Dec 02, 2010 9:40 am, edited 1 time in total.
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Postby VeeBee » Thu Dec 02, 2010 9:36 am

Glad to hear it Joan.

MSSociety are wide open. They have all the favoritism but there's plenty of room for maneuver.

I seriously hope you all kick their arses, GL :wink:
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Postby BooBear » Thu Dec 02, 2010 10:27 am

bluesky63 wrote:Boo Bear, I don't know if you looked thoroughly at the links I posted, but I would be interested in your take on the specific documents on the NMSS site. I am also still left wondering about the overall financial question my searching gave me: it seems they are free to crunch their financial data different ways. They can consolidate *all* national data, or they can use only the central office and let each chapter be its own individual franchise. What does this imply to us as the ultimate "owners" of this "business"?


I checked out your links, BlueSky, as well as reviewed all of the financial statements available on the NMSS site (including the tax return) for 2009.

From what I can pull together, the NMSS provides consolidated financials for the home office (in NY) and all of the individual chapters. Tax returns are also filed on a consolidated level.

For the individual chapters, there is a requirement to keep books assigned to that chapter (which are consolidated in kind with the home office). From everything I noted in the financials, they follow GAAP (generally accepted accounting principles) equally at the chapter and home office.

Each "franchise"- good analogy- uses monies from the home office as well as contributes to the home office for the general fund. The line item detail on those transactions are noted in the consolidated financials; essentially, the money spent by the Society in support of those "franchises" is noted as an expense and the money raised by those franchises and contributed to the Society appears as revenue.

I am sure that the idea was to allow for local dollars to support local patients, as well as to comply with state laws on non-profits and recordkeeping (and possibly to take advantage of tax breaks where applicable), etc. Also, as the Society has employees, it would be necessary to have the franchises established in the operating states for employee tax collection and reporting, etc.

Net/net, all the money is spent in pretty much the same way- consolidated overall.
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Postby cheerleader » Thu Dec 02, 2010 10:35 am

bluesky63 wrote:
Edit -- Sorry if this info I have posted is a sidetrack -- I think what has struck me more than anything is the difference between the massive machine of the worldwide MS fundraising efforts and the personal efforts that I have seen from people like Cheerleader. Perhaps that's exactly how Sylvia Lawry began. Cheerleader, I will quit posting in this thread now and end by saying a huge thank you for your efforts, which have had a direct positive effect on my family's life, which in turn ripples out. Thank you. :-)


No problem--bluesky :) thanks for the thanks.
The history of how the NMMS began is really fascinating. Started out as an ad placed in the NY Times by Sylvia Lawry, looking for anyone to help her brother who had MS. (no internet back then) It began as a patient/caregiver advocacy group, and was the first such group that brought patients and doctors together. It was a huge paradigm shift. I recently finished reading a terrific book on this topic-
A History of Multiple Sclerosis by Colin L. Taley
anyhooo---I don't think Ms. Lawry was interested in making a buck...just helping her brother. When MS is personal, money doesn't really come into the equation.
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Postby malden » Fri Dec 03, 2010 10:54 pm

BooBear wrote:I checked out your links, BlueSky, as well as reviewed all of the financial statements available on the NMSS site (including the tax return) for 2009.

From what I can pull together, the NMSS provides consolidated financials for the home office (in NY) and all of the individual chapters. Tax returns are also filed on a consolidated level.

For the individual chapters, there is a requirement to keep books assigned to that chapter (which are consolidated in kind with the home office). From everything I noted in the financials, they follow GAAP (generally accepted accounting principles) equally at the chapter and home office.

Each "franchise"- good analogy- uses monies from the home office as well as contributes to the home office for the general fund. The line item detail on those transactions are noted in the consolidated financials; essentially, the money spent by the Society in support of those "franchises" is noted as an expense and the money raised by those franchises and contributed to the Society appears as revenue.

I am sure that the idea was to allow for local dollars to support local patients, as well as to comply with state laws on non-profits and recordkeeping (and possibly to take advantage of tax breaks where applicable), etc. Also, as the Society has employees, it would be necessary to have the franchises established in the operating states for employee tax collection and reporting, etc.

Net/net, all the money is spent in pretty much the same way- consolidated overall.


Is it possible for someone to 'take advantage of tax breaks' by giving money to non-for-profit, getting tax returns for that donation, and then, as a non-profit director, buy yourself an airplane ticket?
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Re: CCSVI Alliance SEO

Postby NHE » Sat Dec 04, 2010 9:47 pm

VeeBee wrote:http://ccsvialliance.org/index.php?option=com_content&view=article&id=122&Itemid=107

should be

http://ccsvialliance.org/science-advisory-board/


<meta name="keywords" content="CCSVI, Multiple Sclerosis...blah,blah, disaster"

should be "science advisory board"

These are assuming proper keyword research has been done, which it hasn't.

Are h tags being used? b? I? repetition?

Anchor text "CCSVI alliance US"?


"Our aim is to provide MS patients, caregivers, and medical professionals with a definitive resource for learning"

Sounds good but pointless if no-one sees it.


I agree that the page addresses are a little too cryptic. However, if you scroll down a bit in the source code for the page header, then you'll find...

<meta name="description" content="The Science Advisory Board of CCSVI Alliance was formed to advise us on current research and study programs, and make recommendations for improving services to the patient and medical community" />


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Postby VeeBee » Sun Dec 05, 2010 9:00 am

NHE wrote:I agree that the page addresses are a little too cryptic. However, if you scroll down a bit in the source code for the page header, then you'll find...


NHE, the point being it was constructed poorly. It's the very basics but I believe they are planning to get a real professional to update it so we can move on.

I'm outta here by 2011. Not going to waste my time aguing over the validity of a "Non Profit" tag. We'll just have to agree to disagree.

--------------------

P.S. totally unrelated - I have information that traces back to "Tony Sandoval" tried to get into my e-mail account this morning

http://www.chicanostudies-elac.org/faculty.html

Part time faculty member of ”East LA college? LMAO
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Postby BooBear » Mon Dec 06, 2010 12:00 pm

Malden wrote:Is it possible for someone to 'take advantage of tax breaks' by giving money to non-for-profit, getting tax returns for that donation, and then, as a non-profit director, buy yourself an airplane ticket?


Why- do you have evidence of such an occurrence? Or are you simply hypothesizing?

I am not sure how familiar you are with the tax code in the United States, Malden, but I am and I gotta tell you- your hypothetical situation would require way too much work for the benefit of an airplane ticket.

So you know, Malden, charitable donations have their limit with application to a tax deduction. And if a director purchased a plane ticket for themselves using their own funds- who cares? If that director traveled for official charity business, then the charity should cover the expense.

But I gotta tell you- I think you need better straws to grasp in order to continue this debate. The one you used in your last post leaves us wanting for logic and reason.
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