Saturday, November 8, 2008

Money, Research, Recruitment

It's been a rather hectic few days in my brain. Bear with me while I fill you in on a few thoughts.

When Michael J. Fox revealed he had been diagnosed with Parkinson's disease, one of the statements he made was that support of research into Parkinson's was also support for MS, Alzheimer's, and other illnesses affecting the brain. So true. Every little nugget of info we can learn about the brain helps us in our understanding of MS. It is dysfunction that enables us to discover how the brain works. We have learned what happens when certain structures of the brain are damaged or destroyed by injury. We just haven't learned how to always effectively repair that damage or in the case of many diseases, prevent the trauma in the first place. MS is contributing to our knowledge of how the brain is supposed to work.

Recently an initiative was announced by the Canadian federal government.
From the MS Society of Canada's website:

"During the federal election campaign, the Conservative Party of Canada pledged to work with Canada’s major neurological charities and to provide $15 million for a four-year study of neurological diseases such as multiple sclerosis.

“With the re-election of a Conservative government on October 14, the MS Society looks forward to working with the federal government to ensure the study proceeds as soon as possible,” said Yves Savoie, president and chief executive officer of the Multiple Sclerosis Society of Canada. “People affected by MS and by other diseases and injuries of the brain and spinal cord need a comprehensive brain strategy, and this study will be a good first step.”

The health, social and economic burden of brain disorders is enormous, Mr. Savoie noted. A 2002 report by the World Bank, the World Health Organization and Harvard School of Public Health found that, when considered in terms of death and disability, the current burden of brain disorders outweighs that of cancer and cardiovascular conditions combined."

Last night I attended a retirement dinner to celebrate the work of Dr. Jock Murray. Dr. Murray was the driving force behind the establishment of Atlantic Canada's first MS Clinic. He developed the Medical Humanities program at the region's medical school and is a big proponent of using the arts to aid in the education of medical students. I could go on forever listing this man's accomplishments, but trust me when I say that he is one of the finest and most respected of teachers and clinicians in this country, if not on the international scene.

One of the things Dr. Murray has encouraged for his patients is to find a way to express their experiences, either through activities or pursuit of hobbies. One patient spoke last night and told how she came to write a book about her experience. I know of other patients who draw or paint. Some patients become very involved with self help groups or chapters. Others write journals or take photographs, others become politically active. Some of us immerse ourselves in research.

The MS Society of Canada has also initiated a fund raising and recruitment campaign called End MS. One of last night's speakers, Yves Savoie no less, stated that 90% of the research into MS in Canada is funded by the MS Society. The proposed four year study will aid the government in determining where the focus of neurological disease research should be. Some of the more cynical of us are saying, "Enough with the studies! Get on with funding research!" I hear you, I really do, because I just want to throw money at researchers, too, and say "Solve this already!" However, the mandate of the MS Society is to not only be a leader in the search for the cause and a cure for MS, but to also aid those already afflicted with MS. Their money goes to research, support, and services. But in order to get government dollars we have to jump through their hoops. By getting support from government, the MS Society will be able to do even more for people already suffering from MS. We also need to attract doctors and researchers to the field of MS. As people like Dr. Murray retire, we need to fill in their slots at the clinics and in the labs. And that is one of the aims of the End MS campaign.

If you're still with my seemingly unconnected thoughts, here it is in a nutshell: All of our experiences, expressed artistically or concretely, contribute to our knowledge of MS, how the brain is supposed to function, how we want it to function. The government wants to know about our experiences and what we need. The MS Society is continuing its mandates while looking for other sources of funding and trying to recruit new talent to the field.

And that's why it takes so long to get funding on a large scale. You and I know what the cost of having MS is to an individual and their family. Now the government wants to know details so they can determine the best places to put their money. I'm preaching to the choir, I know. However, perhaps a new choir member will read something one of has written, be inspired, and find a solution.

Here's hoping.


Denver Refashionista said...

I am following you here. I think you have deepened my understanding of the process by which we must move forward.

Kim said...

I wish I could have been there to see Dr. Murray. Ever since interviewing him a couple years ago, I've been absolutely amazed by his contribution to MS. Sad to hear him retiring but as he told me, this it he right time to be diagnosed at the research is coming fast and furious. Hopefully we'll keep these big dumps of money to keep it going!

Shauna said...

One of the things a few speakers mentioned at the dinner was Dr. Murray's research, MS in general, but into Amantadine specifically. Apparently, the research he presented 30 years ago is still the benchmark for treating fatigue in MS patients.

I am confident in knowing we haven't heard the last of Dr. Murray and his contributions. He began the initial clinical trials for Avonex 15 years ago here in Nova Scotia....and some of us are still being studied, myself included.

I've had the pleasure of speaking with him as a patient and as just a "normal" person and in both circumstances he doesn't pass up the opportunity to teach. Last March, he and his wife happened across a Tea Party I was hosting for the VON (and dressed as Alice in Wonderland). They stayed for tea and I found out that Dr. Murray has also researched Alice in Wonderland quite extensively. That research was alluded to a few times at the dinner the other night as well.

Much like Dr. Penfield was revered in Montreal, I get the same feeling of reverence about Dr. Murray here in Nova Scotia. I must say that it was certainly fate that I ended up in his clinic, with him as my examining neuro, and that is another one of life's strange little coincidences.

I found out a few years ago that he was Roberta Bondar's thesis advisor (or whatever they call them these days) when she was in grad school. Dr. Bondar, before becoming Canada's first woman in space, was a neuroscientist.

Did you know that Dr. Murray never graduated from high school or completed his undergraduate degree at St. F. X.? He finished grade 11 and then headed off to university, where after 3 years of a 4 year program, he began studying medicine. Both he and his wife are extremely intelligent, patient people, who seem to truly enjoy each other's company. And at the dinner, both spoke so lovingly of each other and their roles in their marriage, it was hard to find a dry eye in the room.