Well, here I go making another post that will probably win me no friends, but I've never been afraid to speak truth to Caesar, and I'm not about to start now.
While I greatly admire Mr. Embry's passion, intellect, and writing skills, quite often his papers wear those passions on their sleeves, and whether intentionally or not, veer dangerously close to the realm of propaganda.
This piece in particular makes several assertions and sites some statistics that stray a considerable distance from the truth.
I can't speak to the motivations of the extreme upper echelons of the MS societies, as I don't have any personal contact or knowledge with or of these people. Certainly, some of their motivations are open to question. Their initial actions in regards to CCSVI were reprehensible, but they have made strides to make amends. In particular, the live webinar on CCSVI organized by the NMSS at this year's AAN meetings was quite valuable.
In the above treatise, Mr. Embry states of MS Society staff members that "Their salary and benefit packages are on par with workers in similar jobs in both the private and public sectors." This is categorically untrue, and I take personal umbrage at this statement, as my wife has in the past worked for several nonprofits at considerable sacrifice to her potential income. The folks staffing the MS societies could in almost all instances make lots more money in the public or private sectors, which is precisely why my wife no longer works for nonprofits.
Even the higher-ups work for considerably less than they could make in the private sector. Joyce Nelson, president of the US NMSS, receives a salary of slightly under $500,000 per year. Certainly nothing to sneeze at, but a CEO running an organization of similar size and scope in the private sector could easily make 3 to 4 times as much money in base salary, before bonuses and stock option packages kick in. Here in New York, mid-level managers at Wall Street firms (and there are thousands of them) would turn their noses up at such a "paltry" salary. Similarly, scads of lawyers bring in higher annual earnings. When I was still able to work, I was employed by one of the major entertainment companies, and at least 100 people in the building where I worked made salaries in excess of that earned by Ms. Nelson. I'm not defending such exorbitant pay in the private sector, as a matter of fact I find it extremely nauseating. I'm simply pointing out that somebody with Ms. Nelson's experience and skill set could make far more money in the private sector than she currently makes working at the MS Society.
Furthermore, Mr. Embry asserts that "The staff members are like soldiers who do what they are told and are not expected to contribute to the scientific or public policies of the society. They are simply the “go-betweens”, the neurologists and the all those seeking information from the society. Notably, most staff members are not affected by MS. ". Again, based on personal experience, this statement rings of extreme bias, and is certainly not true of the majority of those working for the MS Society, who, as I talked about above, could make more money working elsewhere. I know several NMSS staff members personally, and have found them to be compassionate human beings, who have considerable leeway for creative thinking and input into the workings of the society. Many of them have been personally touched by the scourge of MS. Do they contribute scientifically? Of course not, they're not scientists. As an example of one of these "go-betweens… not affected by MS", I'd direct you to the post entitled "Grand Larceny" on my Wheelchair Kamikaze blog that includes a profile of a staffer at the NMSS's Denver office whose mother was stricken with MS when the staffer was 10 years old, and is now completely bedridden and in a nursing home. She made an extremely emotional video tribute to her mother, which is included in the post, which you can find here:
http://www.wheelchairkamikaze.com/2010/ ... rceny.html
As for Mr. Embry's assertion that 80% to 85% of donated funds go to the payment of "fund-raising costs, the salaries and benefits of the staff members, and substantial administrative expenses", this number is way off the mark. According to the Charity Navigator site, the US NMSS spends approximately 15% of their revenue on such expenses, as can be found here:
http://www.charitynavigator.org/index.c ... orgid=4189
That same number is also backed up by the Better Business Bureau, here:
http://www.bbb.org/charity-reviews/nati ... ork-ny-597
the Canadian MS society does spend quite a bit on similar functions, about 48%, still a far cry from the numbers cited by Mr. Embry. You can find the accurate number here:
http://www.moneysense.ca/2009/12/21/can ... charities/
One must also keep in mind that in addition to funding research, the MS societies provide many valuable services to MS patients, including support groups for both patients and caregivers, government advocacy, MS education, financial assistance, scholarships for those living with MS or their children, employment resources, and help with procuring assistive devices.
Would I like to see the NMSS stop taking all funding from pharmaceutical companies (which, according to public documents, accounts for less than 5% of their funding)? Absolutely. Would I like to see the MS societies take a more aggressive stance on CCSVI research, and immediately fund treatment studies? Again, absolutely. Do I believe that changes need to be made in the hierarchy of the societies, starting with their board members? Once again, absolutely.
The societies also do need to take a multidisciplinary approach to staffing their scientific advisoy boards, now that it has become clear that MS is much more than a neurologic disease.
There is plenty that needs to be changed about the MS societies as they are now constituted, but attacking the many decent people who work diligently on behalf of MS patients (though the organization they work for may be misguided), and citing inaccurate numbers in support of an obvious agenda, makes that agenda, however legitimate and ultimately well-meaning it might be, much too easy to dismiss.
A man of Mr. Embry's immense intellect and talent could certainly make his points without resorting to personal attacks and dubious statistics.