The National MS Society

As I began drafting this story in September 2018, I had a very bad opinion of the U.S. National Multiple Sclerosis Society (NMSS). I know some feel much more positively about it, and that’s not a bad thing. Whatever gives hope to someone with MS, I’m all for it.

My nature is to be kind, to a fault at times, assuming people mean well. I give someone the benefit of the doubt when he or she absolutely hasn’t merited it. I have the disease to please. However, over the years, I have learned to look beyond the veneer and speak from my heart, which means that I don’t always speak kindly.

The nature of blogs is openness, also to a fault at times. Anonymous blogs give writers a license to speak recklessly. Honestly, I want to slam NMSS based on my own perspective, but I value facts, so I decided to reevaluate my opinions.

But first, why the bad opinion of NMSS?

When I was first diagnosed in 2003 with MS, I attended a support group facilitated by the NMSS chapter in my hometown of DC. Everyone was crying, and the NMSS group facilitator was listening with empathy and talking about the importance of acceptance.

I left that first (and last) NMSS meeting feeling badly about how much I hated it. I wanted information to help myself and was unwilling to accept my fate as inevitably bad. I had no alternate sources at the time, but I remember thinking that there had to be something better. Subsequently, I got nothing but information about injectable drugs from NMSS and five different neurologists that I asked in DC, the nation’s capital.

Years later, a friend, whose 40-something year old husband has advanced MS, was searching for assisted-living facilities. NMSS gave her a list of nursing homes in the DC area, but the list was not tailored to MS needs. For example, many nursing homes cannot by law accept patients under age 55. Other nursing homes cannot accept patients who use feeding tubes, which her husband needs. The NMSS’ help was perfunctory, at best, and heartless, in my humble opinion.

As a result, my friend’s husband lives at home with her, and they have a home-care professional for 12 hours every day. Four years ago, one of the caretakers embezzled thousands of dollars from them. Given the caretaker’s familiarity with their home, they decided not to press charges because they feared for their security. They hired an armed security guard to live in their home for a while after firing the person.

If anyone could advocate for policy reform or join forces to help my friend find a suitable care facility, I would think it is an organization that refers to its “highly skilled, compassionate professionals [who can] connect you to the information, resources and support needed to move your life forward [and] navigate the challenges of MS unique to your situation.” Nope.

Another friend with newly diagnosed MS attended an NMSS support group, and they served cheese pizza. My friend asked a fellow attendee if he was aware of the science of dairy and MS (and many other chronic illnesses, for that matter), and the attendee responded, “MS has taken so much from my life; I am not also giving up pizza.” My link above provides seven citations to major research institutions and journals. Yet an association as gigantic as NMSS was clueless about this issue? Wow. The NMSS is asleep at the wheel.

I looked for other MS groups to see if they provided better leadership. Those Canadians up north are known for being good people. Surely, they would provide a better model. Nope again.

As documented in the film Living Proof, the MS Society of Canada (MSSC) sent Matt Embry a cease and desist letter when he started his own blog – MS Hope – to spread scientific research and information about MS outcomes related to diet,  exercise, and other approaches.

It’s not like Embry recommended that people with MS inject kryptonite, an alien mineral, into their eyeballs. Or even bee stings, which was indeed a weird era for alternative MS cures. Embry just suggested that a healthy lifestyle could make the difference between health and disability. For that, he should cease and desist? WTF? (I can write that on my own anonymous blog, can’t I?)

Embry is a father, and a husband, and a working man. Contemplating a stressful and potentially expensive lawsuit and angry that the MSSC used its funding to hire expensive lawyers to silence people like him, Matt produced this excellent 5-minute video. The best scene in Living Proof cemented my mistrust in the MS drugs that I injected for nine years of my life, while my MRIs were riddled with lesions and my symptoms worsened. Wow, again.

Stories like this recent one from the NYT — Top Cancer Researcher Fails to Disclose Corporate Financial Ties in Major Research Journals (Sept 8, 2018) — show how widespread the problem is. To me, I see people driven to madness by profit. Can you help me to see it differently? Can one not imagine the desperation of someone with cancer or MS? To me, such conflicts of interest are unethical and heartless and disgusting. I won’t mince my words.

But surely these people don’t intend to hurt anybody. Looking at the NMSS webpage, my heart feels warm, and I wonder if I am being just a wee bit maniacal. 

So I set out to answer one question: is the NMSS a partner in the search for a cure for MS? My methodology: I simply mirrored Matt Embry’s research in Canada, focusing on NMSS’ finances, mission, and leadership.

Easy! NMSS’ financials are available on its website. The following table compares data presented in Matt Embry’s video linked above with data from NMSS’ annual financial statements. I couldn’t get the same three years of data, but the raw numbers are less important than the percentage of total revenue.

Canada MSSC* % US NMSS** %
Total Revenue $211 M $209 M
Salaries $76 M 36% $88 M 42%
Fundraising $86 M 41% $39 M 19%
Research $32 M 15% $48 M 23%

*2010-2013 versus **2015-2017

MSSC is no role model, but it is a benchmark. A quick review shows that MSSC spends a higher percentage of total revenue to fundraise, and a lower percentage of total revenue on salaries and research.

In the category of fundraising, Money Sense magazine gave MSSC a D grade for fundraising efficiency, which is not surprising, based on Matt Embry’s research. In the US, Charity Navigator gave NMSS two of four stars for finances. If I got 50% on an exam, I’d assume that was an F, but I’ll call it a C (half way between an A and F). Why not?

Embry did not talk in his video about MSSC’ funds from the pharmaceutical industry, and I couldn’t find it on the MSSC website. The NMSS website states that it received $8 million, which is less than 4% of overall funding, in support from pharmaceutical companies. That’s a lot of dough. If the drugs were so effective, people with MS — including me — would be lined up around the corner to take these drugs. Why does NMSS need to accept this funding? If it is so small a percentage of overall funding, could NMSS achieve its goals without it and its influence? If not, why not? I don’t have answers.

In the category of salaries, I wish NMSS’ percentage for salaries was much lower, but it is hard to tell if this number is bad or good. I want strong leadership with a track record of success in tackling daunting health challenges, and that often comes with a higher price tag. Maybe. I looked on the NMSS website to get to know its leadership. This site offers a list of 64 names and titles for its Board of Directors, senior leadership team, national advisory board, etc, but it offers, truly, a big fat zero in details about their experience. 

So I requested such details via the NMSS “Contact Us” email on their website. After two weeks of email exchanges with NMSS about why I wanted this information and what sort of details I needed, NMSS provided paragraphs pasted below*** for 5 of these 64 people. The NMSS reps were very friendly, but I remain perplexed about why it took so long to get a fraction of the full information I requested. These paragraphs tell me nothing. Frankly, I don’t give a shit that the NMSS CEO was born in Norfolk, got an MA in psychology, or lives in Honeoye, NY.

In the category of research, NMSS lists on the Charity Navigator site its first of 13 strategies to combat MS: to “Lead global collaborative MS research.” I truly don’t want to be negative, but if an organization spends less than one quarter of total revenue on research, how can it lead? When I see “gala balls” and “MS Walks” offered, I know that these events are supposed to raise money for research. I actually enjoy the photos of all the beautiful donors in sparkly dresses and tuxedos toasting with glasses of sparkly champagne. But NMSS spends 23% of total revenue on research? Really? Can we be real for a moment? 

I looked further into NMSS’ strategy as listed on the Charity Navigator site. Among those that caught my eye are in italics:

Increase access to MS care. My friend’s experience, described above, really makes me doubt their commitment to this goal. My friend said that once a person has advanced MS, NMSS does not offer much of anything. Then what does NMSS offer?

Increase revenue, retention and acquisition of our individual giving donors through consistent identification, exceptional engagement, timely solicitation and relevant stewardship. Increased revenue? What about increased return on investment or more impactful use of existing revenue? Relevant stewardship? What about my friend’s husband, eating from a feeding tube, not allowed by law in a proper care facility, and at home with an armed guard (which cannot be cheap and isn’t covered by insurance)? What does just increasing revenue do, when research and policy advocacy are stagnant? Useless. Sure, maybe I do have anger issues.

Increase special events and corporate revenue through a unified plan focused on a consistently extraordinary experience and exceptional relationship development. To me, increasing special events is vague and hardly a fricken goal to fight my numb toes on my right foot and does nothing to mitigate my fear of life in a wheelchair. Do more events equal better MS outcomes? As well,  “consistently extraordinary experience and exceptional relationship management” sounds like mumbo jumbo. 

And on it goes.

What exactly does that mean for an MS cure? Because, honestly, what is the point of a national body if I can’t see the link between its actions and a cure?

Matt Embry’s recommendations:

  1. Restructuring of compensation for all highly paid MSSC executives; and
  2. Cut ties with medical professionals who receive money from the drug industry.

I like both ideas very much. My recommendations:

  1. Donate to Overcoming Multiple Sclerosis, started by an Australian doctor with MS, whose mother died of MS, and who accepts zero money from drug companies.
  2. Donate to Direct MS, started by Matt Embry’s parents, who also do not accept donations from drug companies.
  3. Review all the resources that I list in the “Stuff I Love” section on the right-hand column of my blog’s landing page, and know that you absolutely have the power to have a bright future with MS.

I am not recommending kryptonite, but I do know for a scientific fact that you can be your own Superman or Superwoman if you focus on improving your lifestyle. That, for me, is the blessing of MS.

***

Executive Leadership Team:

Cyndi Zagieboylo

President & CEO

President and CEO of the Society since October, 2011, Cyndi began her National MS Society career in 1985 and has worked with every CEO of the organization including founder, Sylvia Lawry.  She has participated in every Society strategic planning process since 2001. Cyndi serves on the Society’s National Board of Directors and as Chair of the National Health Council Board of Directors.  She participates on the Multiple Sclerosis International Federation CEO Advisory Group and serves on the Board of Directors. She is a founding member of the International Progressive MS Alliance which was launched in 2013, and she provides leadership as chair of the executive committee.

Born in Norfolk, Massachusetts, Cyndi received her bachelor’s degree in rehabilitation counseling and psychology from Springfield College, followed by a master’s degree in social psychology from the University of Connecticut.  She lives in Honeoye Falls, NY.

John Scott

Chief Development & Community Leadership Officer

John H. Scott is the Society’s Chief Leadership and Organizational Development Officer.  He has been with the Society since 1987; where he started at Minnesota and helped launch the event that is now the Walk MS.

He served in several positions including President of Greater Delaware Valley. During this time, annual income increased from $2.4 million to over $11.5 million. John has experience in human resource development, strategic and operational planning, building collaborative teams and extensive community outreach.

He works with staff and leadership volunteers across the Society to increase operational effectiveness and human and financial performance.  John is a member of the Society’s Executive Leadership Team, provides leadership for the Society Leadership and Management Team, was a member of the Strategic Plan Development Advisory Committee and is a co-lead for the task force charged with building a unified Society planning and budgeting process.  In addition to his work with the National MS Society, John has conducted several trainings for a variety of non-profits in strategic and organizational development and operational planning.

Paul Weiss

Chief CRM, Marketing and Technology Officer

Paul is the Society’s Chief Operating Officer, a position he has held since August 2008. In this role, he guides the Society-wide strategic plan and provides leadership to operations — finance, human resources, technology, legal and risk management and project management. He is a member of the President and CEOs Executive Leadership Team and works across the organization on Society policy, practices and continuous improvement.

Paul has served on the Society’s: Blue Ribbon Panel; FY11-15 Strategic Response Steering Committee; Operational Planning and Budgeting Task Force; the Charting our Future Task Force; the Audit Task Force and the FY2016-2018 Strategic Plan Advisory Committee. Paul brings expertise in strategic planning and operational execution; board development; project management; revenue generation and diversification; management training and orientation; and human resources and financial management.

Paul started his career at Coopers & Lybrand, working in their New York City and Sydney, Australia offices from 1983-1991. In the late 80s, Paul began volunteering at the New York City Chapter of the National MS Society, and in 1991 he became the Society’s financial Controller. From 1991-99 he served in a variety of positions in addition to Controller, including: Senior Operations Analyst, Staff Vice President, and Vice President, Fundraising. Prior to his return to the Society, Paul was the Sr. Vice President, Field Management, at The Leukemia & Lymphoma Society from 1999-2008.

Paul holds a B.S. in accounting from the University of Connecticut and is a Certified Public Accountant. He lives in Nyack, New York with his wife, Annie and their three children: Ryan, Charlotte and Cecilia.

Tim Coetzee, Ph.D.

Chief Advocacy, Services & Research Officer

Dr. Tim Coetzee serves as the Society’s Chief Advocacy, Services and Research Officer. In this role, he leads the organization’s efforts to drive public policy, implement impactful and sustainable programs and services for people with MS, and fund innovative MS research around the world.  Tim is a member of the Society’s Executive Leadership Team, serves on the Scientific Steering Committee of the International Progressive MS Alliance, and is a member of the Advisory Council of the National Institute of Neurological Disorders and Stroke.  Prior to joining the Society, Tim was a faculty member at the University of Connecticut Health Center where he conducted MS research focused on the area of myelin and myelin repair. Tim received his PhD in molecular biology from Albany Medical College and followed that with fellowship training at the University of North Carolina Chapel Hill.  His work in MS research was launched with a fellowship from the National MS Society.

Tami Caesar

Chief Financial and Operations Officer

Tami has 27 years of experience in finance, fund development and program operations within the not-for-profit sector. She is currently the Chief Financial and Operations Officer for the Society and oversees accounting, compliance, treasury management, payroll, employee benefits and general operations across the country.  She also leads a strategic finance team focused on planning, budgeting, analytics and measurement of performance indicators to help inform business decisions. She is a member of the Executive Leadership Team.

Tami has an MBA from Villanova University. She served as Social Enterprise Faculty at the Villanova School of Business from 2014-2017 and was an Advisory Board Member for the Villanova Center for Church and Business Ethics. Tami has a long history of serving on the boards of not-for-profit organizations since her early career in Seattle, WA and during her tenure in Orlando. She continues that commitment to community in the Philadelphia area. Tami and her husband, Steve, are empty nesters living in Rose Valley, PA, a suburb of Philadelphia.

2 thoughts on “The National MS Society”

  1. Dr. Roy Swank first started treating MS patients with a low fat diet in about 1950, and by 1955 he had noted a 90% reduction in relapse rate with his diet. To this day the NM$$ has ignored Swank’s findings. For 68 years hundreds of thousands of people have been denied this effective treatment. The Tuskegee syphilis experiment was notorious because it denied effective treatment to a few hundred people for about 35 years; the NM$$ has harmed a thousand times as many people for twice as long. I will have nothing to do with the NM$$ until they admit that Dr. Swank was right and that they have been responsible for hundreds of thousands of deaths.

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    1. Thank you so much, John. I was worried that I was alone in my negative opinion of NM$$ (clever). 😉 And sadly true. I would love to mobilize their reach, but I am just horrified by the experience I shared in this blog.

      Like

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