A month or two ago, I joined an MS Facebook group called, “Young Adults with MS in Greater Edmonton.” Today, a link was posted to an article in the Calgary Herald titled, “MS survivor pushing for major change at national charity.” The article profiles Matt Embry who has been using diet modification and exercise to combat his multiple sclerosis. Specifically, the article focuses on his challenge to the MS Society for change due to, as what is stated in the article, only 16 cents for every dollar raised going to research. As someone who recently raised over $23,000 for the MS Society of Canada with the Really Long Run to End MS, I was very intrigued by the article.
The article also states:
In an annual grading of the 100 biggest charities in Canada, MoneySense magazine gave the Multiple Sclerosis Society of Canada a B- in 2015. That included a D for both charity and fundraising efficiency, and A+ for both reserves and governance.
And quotes Embry as stating:
This is a society that was created for people with MS; to defend us; to represent us; and to find us a cure. And given that only 16 percent of their revenues are spent on researching a cure for MS, I question who the society is truly for. It’s clear to me the MS Society has lost its way.
While I was fundraising and promoting the Really Long Run to End MS an Aunt asked me about the MS Society’s fundraising structure (I have no idea why it didn’t occur to me to ask on my own). So I asked the question to the MS Society, “When funds are raised on behalf of the MS Society, what is the breakdown of how much goes to research, admin, etc?” The MS Society’s response (via email):
Good question. We have 28% cost of fundraising so it costs 28 cents for every dollar that we raise. We are also 98% self-funded. After that, half of the money goes to MS research and half of the money goes to support services for those affected by MS.
Obviously, the numbers don’t match with what was reported in the Calgary Herald article. In addition, while Herald story gives a number for how much of the money raised goes to research (16% ), the story doesn’t touch on the percentage of funds which go to support services. This omission could give the reader of the article the impression that only 16% of the money raised goes towards people with MS while the rest goes towards administration, salaries, etc. While research is crucial, support services for people with MS (especially advanced MS) are just as important. According to the MS Society, 72% is split between research and support services.
Who to believe? Isn’t that always the case with everything multiple sclerosis? From the Liberation Therapy to different diet theories, it is always left up to the individual MSer to decide; which almost isn’t fair as it is such an emotional thing to try and do. I didn’t write this post to give an answer, as I don’t have one. I do think that we, as MSers in Canada, need to hold our Society to account in the same way we should hold our elected officials to account. We need to ask the questions and speak out if we don’t like the answers.
I should note that my interactions with the MS Society of Canada have been extremely positive, however, I still need to get an in depth summary of their funding model.
I’m planning to again run the Really Long Run next May. As part of the run, the story on Matt has motivated me to ask the MS Society to precisely lay out for how the money I raise will be spent and I’ll report what they provide me here. It is only fair since I am asking people to donate money.
The other point that the article touches on is diet. The “Best Bet” diet mentioned has been around on Matt’s father’s (Ashton Embry) website, Direct-MS.org, since at least 2007 (that is when I became aware of it). It is based on the paleo diet (you can read Dr. Loren Cordain’s paper, Origins and evolution of the Western diet: health implications for the 21st century, which seemed to kick off the paleo craze, here) and may seem similar to what is proposed by Dr. Terry Wahls (though Direct-MS predates Dr. Wahls). I started following the dietary recommendations given at the Direct-MS website in late 2007 and have experimented with the diet ever since. The Direct-MS website had a huge impact on me early on and continues to to this day. Can I claim that I never cheat on the diet? Absolutely not. Can I claim that the diet is what has kept my MS in check for eight years? No, I can’t (how could I clinically prove that?). Do I believe it has been a factor? Absolutely and, as Matt mentions in the article, exercise plays a huge role.
Where I differ from both Embry’s, is that I also follow the instructions of my neurologist. I was on Copaxone for almost two years and after a mild episode, I was switched to Tecfidera. My view is that I want to be as well as possible and it is not political. If diet can help, great! If exercise can help, why not do an ultra marathon! If the DMT’s show promise, I’ll take them too. At the end of the day, I read everything I can (do my own research) and if seems reasonable and safe, I’m all in. I just want to be as well as possible.
I really wish it was easier as someone struggling with a disease to know who to believe.