Subcommittee on Neurological Disease Committee on Nov. 16th, 2010

[The Chair, Conservative, Joy Smith]

Good morning, and welcome to the Subcommittee on Neurological Disease of the Standing Committee on Health. We're so pleased to have you here this morning.

We meet from 8:45 to 10:45 on Tuesdays. This subcommittee has become an extremely important committee. Neurological disorders or diseases are something that this subcommittee has taken a great deal of interest in and done a great deal of study on.

Pursuant to Standing Order 108(2), we are continuing our study on neurological diseases. We have a number of witnesses today.

From Parkinson Society Canada, we have Joyce Gordon, president and chief executive officer. Welcome, Joyce.

From the Ottawa Hospital Research Institute, we have Michael Schlossmacher, a scientist in neuroscience.

From the University of British Columbia, we have Jon Stoessl, professor, head of neurology, director of the Pacific Parkinson's Research Centre, and Canada research chair in Parkinson's disease.

We are also so pleased to have Mr. Greg McGinnis, here as an individual.

Each of you has five to seven minutes to present, and then we go into our round of Q and A.

We're going to begin with Ms. Joyce Gordon.

[Joyce Gordon, President and Chief Executive Officer, Parkinson Society Canada]

Thank you, Madam Chair and members of the subcommittee. I appreciate the opportunity to speak with you on behalf of more than 100,000 Canadians who live with Parkinson's today, and their families, and on behalf of the thousands of volunteers and donors who support the work of Parkinson Society Canada.

Parkinson Society Canada was founded in 1965 by a small group of people with Parkinson's in Toronto. Today the organization stretches across Canada with regional partners in every province and with 235 community-based support groups from coast to coast. Our collective work is about making connections, ensuring that individuals living with Parkinson's are connected to the information and support they need throughout their disease; investing $1.2 million each year to fund Canadian investigators to make connections through basic clinical and psychosocial research; connecting researchers across Canada to ensure that knowledge is being shared and translated into best practice; and connecting people living with Parkinson's to policy-makers such as yourselves to ensure that the impact of the Parkinson's experience is understood and the needs of our community are met. Parkinson Society Canada is the only national organization in Canada doing this work.

I am delighted to share the panel today with Greg McGinnis, who will educate all of us about the realities of young-onset Parkinson's, and with two of Canada's best minds in Parkinson's clinical practice and research, Dr. Stoessl and Dr. Schlossmacher.

I'd like to use this opportunity to highlight some important issues and needs facing Canadians with Parkinson's and their families that are often overlooked.

There is no known cause of Parkinson's and there is no cure. The number of people with Parkinson's is expected to double in the next 20 years. Parkinson's is not a disease of the elderly and it is not a natural part of aging. Parkinson's affects adults across a wide range of ages, all too often in their thirties, forties, and fifties, when they are busy building careers and raising families. Most are forced to leave the workforce only a few short years after their diagnosis, facing unplanned early retirement and the harsh reality of poverty as an added consequence of Parkinson's disease.

Parkinson Society Canada has developed six recommendations about how the Government of Canada might adjust existing finance policy to help individuals and families living with Parkinson's experience greater financial stability and security. We would be happy to provide the documents to the subcommittee.

Caregivers, often spouses or family members, play a vital role for people with Parkinson's. They are an integral part of the care team. Remembering that Parkinson's is a degenerative disorder that cannot be slowed or halted, the reality is that people with Parkinson's experience an ever-increasing need for care and support from those around them. Very often caregivers provide the support to the detriment of their own personal health and financial well-being. More must be done to prioritize and address the needs of this invaluable volunteer workforce, without whom governments at all levels would be overwhelmed. Understanding the delivery of health care is a provincial and territorial mandate. It is important to note that the best care for Parkinson's disease is delivered by a multidisciplinary team with expertise in Parkinson's.

I'm sure Dr. Stoessl will touch on the role of the movement disorders clinic. However, I'd like to emphasize that in many provinces, wait-lists are long, as much as 18 months. As one might expect, these centres of excellence are located in urban centres, meaning that rural residents must travel some distance to access care.

Canadians with Parkinson's tell us that their lives would be significantly improved if people within their communities understood more about Parkinson's and brain disease overall. As Parkinson's progresses, the outward symptoms mask the person inside. People often feel misunderstood and minimized. Frustration, embarrassment, and communication challenges build as they become more and more isolated from their families and their communities. The general lack of awareness and understanding results in continuing stigma and makes way for many types of discrimination.

One of the areas of concern to the Parkinson's community is discrimination on the basis of genetics. Legislation is urgently needed to protect the privacy of individuals' genetic information and to protect Canadians from unfair treatment on the basis of often-misguided perceptions about the role that genetics can play in developing brain disease.

Parkinson Society Canada is an active member of the Canadian Coalition for Genetic Fairness, and again, we would be happy to share detailed information on this issue with the subcommittee.

Parkinson Society Canada has been raising these issues with policy-makers and parliamentarians for many years. Unfortunately, due to the relatively small size of the Canadian Parkinson's community, these issues have been overshadowed by other conditions with perceived greater impact than Parkinson's.

It was for this reason that Parkinson Society Canada played a lead role in establishing Neurological Health Charities Canada, a growing coalition of organizations that represent and serve Canadians living with neurological conditions.

As you may know, the NHCC has proposed a framework for building a national brain strategy to the Government of Canada. This framework has unanimous support from the 24 members of NHCC because it addresses the most need across the continuum of neurological conditions. I'm sure that in the presentations you may get a sense that there are differences, but there certainly are a lot of commonalities that can benefit all conditions if we look at it in a holistic way.

We sincerely hope that this subcommittee will support the community's call for a comprehensive and coordinated brain strategy. We are very pleased with this government's commitment of $15 million to fund Canada's first ever national population health study on neurological conditions. I sit on the implementation committee for this study, and am delighted with the level of collaboration and innovative thinking that have shaped this project being co-led by Neurological Health Charities Canada and the Public Health Agency of Canada. So thank you.

We are also grateful for the work of this subcommittee, and for the individual interest and dedication each of you have shown this cause. We appreciate the opportunity to present the specific issues and needs facing Canadians with Parkinson's and their families. We hope this subcommittee shares our perspective regarding the urgent nature of this work.

In 2013 the World Parkinson Congress will be coming to Canada. We will have an opportunity to showcase to the world what we in Canada have done in Parkinson's. We will have an opportunity to lead the way and profile and enhance what we do as an organization supporting people with Parkinson's. We will be able to stand proud that the results of the neurological subcommittee's work and the work of this committee will hopefully result in actions for the benefit of people living with Parkinson's.

Thank you.

[The Chair, Conservative, Joy Smith]

Ms. Gordon, thank you very much.

I don't have a copy of your presentation. Could you ensure that a copy of your presentation gets to the clerk? She will have it translated and give it to all the subcommittee members.

[Joyce Gordon]

Absolutely.

[The Chair, Conservative, Joy Smith]

Thank you.

Now we'll go to Dr. Michael Schlossmacher.

[Dr. Michael Schlossmacher, Scientist, Neuroscience, Ottawa Hospital Research Institute]

Good morning. Bonjour. Thank you very much for the opportunity to address members of Parliament in the context of this subcommittee to talk about something that each of us feels very passionate about, namely, neurological diseases and how to fight them, particularly with respect to Parkinson's disease.

I'd like to give you a very brief background on my role and the work that we do on Parkinson's research, and then maybe finish with a few thoughts from an international perspective.

I grew up in Vienna, Austria. I went to medical school there and did internal medicine training. I then went to the United States and spent 16 years there training in scientific research on Alzheimer's disease, learning to become a neurologist and then focusing on becoming a physician for Parkinson's disease patients and other patients with movement disorders.

In late 2006, I had the opportunity to come to Canada, in large part through the support of the Canadian government, to join the neuroscience community here. For the record, I wish to state that I'm extremely grateful and very happy to be here and to be part of a very vibrant community. I fully identify with the Canadian values, not just regarding societal priorities but also regarding Canada's scientific conduct.

What I really like about being in Canada is that, in my opinion, it's very innovative and collaborative. I think you've heard it already from Joyce and you'll hear it from the other two speakers. By that I mean that our scientific approach is often very much team-based. That is a critical element for succeeding in research today.

Canadian science is also invariably of high quality and is internationally respected. It is also, in some areas, underfunded. Such a comment, one could argue, is typical of a researcher, but in the following minutes, I'd like to draw your attention—Dr. Stoessl is going to do this too—to the fact that we actually see ourselves also as innovators and as engines of a knowledge-based and health-care economy rather than as self-serving occupants of an ivory tower.

In my work I spend approximately 70% of my time directing a laboratory, and 15% to 20% of my time is spent working with patients. I spend a small amount of time directing a program that I've built in Ottawa, namely a Ph.D. program that allows students to become proficient in two languages—the language of medical care and the language of scientific conduct. That's a passion that all of us share.

When I finished residency training in Boston, having focused on Alzheimer's disease, I switched to Parkinson's disease for a number of reasons, one of which was that at that time, in 1997-98, in the study of Parkinson's disease a genetic revolution was taking place. In other words, we all of a sudden had unprecedented opportunities to gain new insights into this critical illness. As you've heard already and as you will hear, obviously our society will be faced with many more patients with dementia and Parkinsonism over the decades to come. When you get genetic clues or insights, they give you great new opportunities, because you can try to understand the disease better and translate it into better models, and then come up with new regimens and drug therapies to combat it.

To give you an example, when people first found out how cholesterol is abnormally regulated, a team led by Brown and Goldstein tackled the problem of how cholesterol is normally internalized and processed. Ultimately that led to a new class of drugs that are called statins, which many of us take and our patients often take to lower cholesterol and prevent heart attacks and strokes. This was a critical insight whereby a disease process was understood and translated successfully into new drugs. It started a whole new industry and helped economies around the world.

So in many ways, in Parkinson's disease we had this genetic revolution that started to take place 15 years ago. Believe it or not, today we have more clues as to how faulty genes lead to Parkinson's than the Alzheimer's field has. That gives us a great opportunity.

If you look at one hundred people who have Parkinson's, 10% to 15% will have inherited a faulty gene from their mother or father, and 5%--five out of a hundred--may have had a horrible environmental or occupational accident and had too much manganese exposure or pesticide exposure and will get Parkinson's. For the remainder, those in the middle, the 80%, there is a combination of environment and genes playing together in what constitutes a complex disease.

So you can see that in many ways Parkinson's is complicated and also complex. But that's not new to us. The same thing happens in Alzheimer's, diabetes, coronary heart disease, and in hypertension obesity: environment and genes. The real challenge will be how we understand it better to ultimately translate it into a cure, which we all are passionate about.

The further thing that complicates Parkinson's is that the incubation time, if you will—the time these diseases develop—is 15 to 20 years. Sometimes it starts with loss of smell, and sometimes with constipation, believe it or not.

For us to capture the whole animal, to see the whole elephant, will take a lot of work from different angles. I strongly believe--and that's the one thing I want to convey to you--that although it's complex and complicated, we can solve that riddle. We can crack that nut. We have the expertise in Canada to make a major contribution to this.

The community of Canadian researchers is well positioned to further explore the mechanisms that lead to Parkinson's and translate that into drugs. That will be done in conjunction with big pharmaceutical companies, with small biotech companies. It will generate new economies, and new businesses as well, as I'll point out to you in a moment.

Essentially what we do today, in part initiated by a former teacher of mine, Dr. Oleh Hornykiewicz, who worked in Toronto for many years, is the same thing that was put in place for Parkinson's 50 years ago. We know how to treat tremors or slowness a bit, but we haven't stopped the disease.

When you have pneumonia, you can now cure the disease because you give an antibiotic that stops the bug, the virus, the bacteria. We can't do this with Parkinson's. We can only treat the tremor a bit. We really need to go to cause-directed treatment. We have to kick at the root cause.

I think in terms of the effort, although it sounds daunting, we can succeed. We have certain elements in place that are unique to Canada. A famous bacteriologist once said that to succeed in science with a medical problem, you need four things: talent, endurance, monetary support, and luck. In Canada, we have talent. We have endurance. With the proper infrastructure and support, we can force the luck. We can crack the nut and make a difference.

Why am I optimistic? We have these critical elements in place and we have the precedent in Canada. I want to mention two things that I think are fantastic examples of how we can solve and proceed and succeed.

One is the Centre for Stroke Recovery, which was built with a large support from the Canadian government. It allowed Dr. Hakim and his colleagues, in the larger province of Ontario and elsewhere in Canada, to change how we deliver stroke care, to come up with new rehabilitation efforts and models, and to research how we help stroke patients.

The second one is a series of national centres of excellence that were built in Vancouver: the PROOF concept, which is led by Dr. Bruce McManus. It has revolutionized how we think about heart disease and kidney disease. Now the United States is copying it and the FDA has approved their approaches.

We can generate new economies, new approaches by succeeding in putting our heads together and collaborating.

In closing, I want to mention two small but very significant examples from the south of the border. I have come to admire how the Americans tried to tackle this. One is the program that is called the Morris K. Udall Centers of Excellence for Parkinson's Disease Research. Mr. Udall was a House of Representatives member for many years, and he was revered. He died of Parkinson's.

The United States put research grants together and generously funded ten centres to tackle Parkinson's. One particular example led to an amazing new economic development, such as at my centre. I was at the Brigham and Women's Hospital in Boston, which received one of these Udall centre awards. One of my patients teamed up with one of our scientists; an angel donor started a company that subsequently attracted $40 million to do Alzheimer's and Parkinson's trials.

The return on a $5 million investment by the government, now having $44 million invested in new research and clinical trials for cause-directed treatment, was unprecedented. Given the fact that the Canadian research dollar goes much further than the United States research dollar, the return on investment in our situation under similar circumstances could be 25-fold to 27-fold bigger.

Why not, for instance, think about the idea of creating something similar to that within the Canadian Institutes of Health Research? It could be called the “Pierre Elliot Trudeau Centre of Excellence in Parkinson's Research”, given the notion that the former Prime Minister died of complications from this disease.

I want to convey to you: yes, we can. With this attitude we can not only solve the problem, we can also benefit as a society from it.

A second example, briefly mentioned, is in Alzheimer's disease, where a collaborative effort between--

[The Chair, Conservative, Joy Smith]

You know, Dr. Schlossmacher, I've gone double the time. What you've said is just so fascinating, but if you could conclude, that would be great.

[Dr. Michael Schlossmacher]

Yes, I will conclude.

[The Chair, Conservative, Joy Smith]

I've been very generous with the time with Ms. Gordon as well.

[Dr. Michael Schlossmacher]

Thank you, Madam Chair. I apologize for going over time.

I want to conclude by saying there is enormous excitement and patriotism in this country that I've experienced since I've come, and I think this could be a fantastic effort to rally the nation, rally the troops, and take this on as a fight to--

[The Chair, Conservative, Joy Smith]

Do you have your presentation in written form?

[Dr. Michael Schlossmacher]

Yes.

[The Chair, Conservative, Joy Smith]

I'd like you to give the clerk a copy of that.

[Dr. Michael Schlossmacher]

I will do that.

[The Chair, Conservative, Joy Smith]

We'll get it translated and distributed to everybody. What you say is very valuable, and it will be very good to revisit your comments.

Thank you very much, Dr. Schlossmacher.

[Dr. Michael Schlossmacher]

Thanks.

[The Chair, Conservative, Joy Smith]

There will be ample opportunity for our committee to question you. I'll be very generous with the time as well.

Now we'll go to Dr. Stoessl.

[Dr. Jon Stoessl, Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia]

Thank you very much, Madam Chair.

Good morning, and thank you for the opportunity to be here.

I would like to start by outlining my interest in the problem of Parkinson's. I'm a clinical neurologist. I've devoted my entire career to Parkinson's disease. I'm also a researcher in Parkinson's and now do pretty much clinically oriented research, although in the past I did more preclinical research.

I'm the former chair of the Parkinson's Society scientific advisory board. In my current administrative role I'm responsible for academic and clinical deliverables for neurology in an urban centre, but I spend a great deal of time thinking about the challenges of delivering care to largely disenfranchised communities that face these enormous geographic problems Joyce has already alluded to.

I'm sure this committee is well aware that brain diseases represent 28% of disability-adjusted life years worldwide. This is for non-communicable disorders. This compares with 22% for cardiovascular diseases and only 11% for cancer. Brain diseases are extremely expensive, both financially and in terms of social consequences, yet they have largely been ignored.

Brain diseases include psychiatric disorders. I understand that the focus of this committee is neurological disorders, but I would just like to remind the members that there are enormous co-morbidities. Most chronic neurological disorders have psychiatric co-morbidities, and the converse is also true. The mechanisms underlying these conditions are likely to be very similar, and in some cases identical.

I'd also like to emphasize that, in my view, clinical and research activities are not divisible. Excellence in one has to inform the other. For many of us, the clinic is in fact our laboratory.

On the research that's being conducted in neurological disorders, Michael has already indicated that Canada has an extraordinarily distinguished history of research in Parkinson's disease dating back to the fifties and sixties. That record of excellence has been sustained, despite the fact that we're a relatively small country, in terms of our economy, with limited resources. I'm happy to outline some examples, but I'll leave that for questions from those who might be interested.

It's also worth remembering that research in one neurodegenerative disorder is likely to inform advances in all the other neurodegenerative disorders, because we're really looking at the mechanisms that contribute to the selective death of isolated groups of nerve cells. Once we understand the mechanisms that are true for one, there are likely to be lessons that can be learned about the others.

In fact, the cross-talk is probably more extensive than that. As Michael was talking, I jotted myself a note that probably the greatest single advance in the last few weeks in terms of understanding Parkinson's is an example of a master regulator gene. That knowledge can be immediately applied because there are drugs that can be used to test the hypothesis in patients. But those are drugs that were developed for diabetes, not for neurological diseases.

The other point that Michael also raised is that while there is a great history of successful researchers, research nowadays will only very rarely succeed using the old model of the single investigator who's in their lab and is brilliant. What we really need are teams of people from multiple disciplines who work together and who actually cross disciplines, but we have very few models right now to support that kind of activity.

CIHR used to have a team grant program, but that has largely been eviscerated. There are only small emerging teams left, or ones with specific goals, so that capacity has been lost. The networks of centres of excellence is another model. Those are difficult to get. I'm currently in the middle of three NCE letters of intent that are going forward in the next week because of Parkinson's involvement, and I'm aware of others. But these are very difficult to get with very limited funding. So they're really not doing what we need.

Additionally, I think a huge problem in Canada, compared to the U.S., is that we do not have good mechanisms for supporting clinician scientists. It's difficult to convince people to do this. We don't have a good track record of training them or of recruiting them. MD Ph.D. programs, such as the one Dr. Schlossmacher just mentioned, are obviously one important mechanism for doing this.

Finally, if I can just talk briefly about the clinical challenges, I understand that health care delivery is a provincial mandate, but I also understand that the federal government plays a critical role in establishing the expectations and setting the standards for delivery of care across the country. I'm sure I won't be the first person to suggest to this committee that our health care system does a superb job of managing acute and critical illness, with care available for all who need it. That's why we love Canada. I, too, am an immigrant, by the way, and am very grateful for the opportunities this country has offered me. But I'm sure you all know that we fall very short in terms of providing care for those who have chronic diseases.

Parkinson's, I want to emphasize, affects not only the individuals who formally carry the diagnosis but all those around them. It affects their ability to work, to be parents, to interact with others, and it affects their sense of dignity. The disease and its treatment may be associated with cognitive and behavioural complications that can be absolutely devastating for the members of their families.

These are complex disorders that are best managed by a multidisciplinary and interdisciplinary approach, but getting funding for the delivery of multidisciplinary care is an enormous challenge, despite the fact that these approaches can save money.

I actually just asked my own hospital to pull out data from 20 to 25 years ago as compared to the present. The number of admissions, or hospital days, where the most responsible diagnosis was Parkinson's, declined from nearly 5,000 between 1984 to 1986 to just over 1,300 between 2006 to 2008.

That's a reduction of 73% in hospital days, despite the fact that the number of people in my province with PD has doubled in that time, and that the more recent figures include hospital and forced hospital admissions for surgical treatment of Parkinson's. But this is only possible if infrastructure can be provided to allow for outstanding ambulatory care, and we fall dangerously short in that matter.

I will close and thank you very much for the opportunity to be here and for your attention.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Stoessl.

Now we'll go to Mr. McGinnis, please.

[Greg McGinnis, As an Individual]

Good morning. Thank you for allowing me to be here.

Fifteen years ago, I would never have dreamt of sitting here to talk to you about Parkinson's. I was diagnosed six years ago, and they told me I have had it 10 years plus, so that puts me back in my 20s.

When diagnosed, I wasn't told of the things that come along with Parkinson's, such as the depression and anxiety that you have to deal with on a daily basis. It has forced me out of my job. I was in my prime, making $50,000 to $60,000 a year; now I'm making $20,000 a year on disability and long-term leave of absence.

This disease can also rip a family apart and pull it together. My mom, her husband, and my brother I have not seen in six years because they cannot deal with this disease. My wife's side of the family has rallied around me and really picked up...and anything that we've needed, they've always been there.

We had to sell our house. We had a two-storey house on a nice lot. Because I was starting to fall down the stairs due to some of the problems with Parkinson's, it was unsafe for me, so we moved to a bungalow. Financially, we are mortgaged to the hilt.

I have a 10-year-old son who worries about me constantly. I have had difficulties when picking him up where I haven't been able to move, and my son thought I was going to die because of this. He is constantly worried. He did not want me to come here today because he is so worried about me.

My wife and I have drug plans and we've capped out on my wife's plan. I normally get Botox for the dystonia in my foot. However, because we have capped out, I cannot afford to get this treatment. So now I have to wait until January before I can have this treatment and start walking a little more easily.

Things that people would normally plan at this age, such as retirement, we don't plan. What we're planning is where I'm going to be in the next 10 to 20 years. Am I going to be in a home? Am I going to be able to take care of myself in my own home? Are we going to have to look at going to a nursing home? This is not what we had planned on or envisioned.

We try to do things that aren't quite as hard on me, right now walking being the biggest thing, so it really limits my family as to what we can do. We used to camp all the time. Due to the medications I'm on, and the heat, I cannot function.

This disease is just.... Nobody tells you what it is and how it's going to affect you. It doesn't affect two people the same way. The main problem I have, as you can see, is the tremor, and of course the dystonia. There are problems with swallowing. There are problems when you can't walk or you can't stop walking. There's the embarrassment of...well, the way I am right now, but I'm not going to apologize for it. I think everybody needs to see this.

People don't understand it, and because they don't understand it, they're either afraid or they're rude. I've had a lot of rude comments put to me: they think I'm an alcoholic, because I do shake, I do have problems walking, I do stagger a bit. When those comments come out, if my son's with me, I don't need to say anything, because my son will tear a strip off the person. He's very good that way.

At home, with the family, we try to add a little levity to it, because you can only cry so much about this. My son constantly makes remarks that I'm giving him a milkshake when I go to pour his milk for him. It's little things like this that we try to do.

I run a golf tournament every year. I play golf; I don't know if it's actually the game I play, but.... The tournament I run is just a community tournament, but we've grown every year. In five years, this was the first year I could not finish my speech because of the disease. But everybody at that tournament was all right with it, and they all told me that they needed to see this.

This is a tournament that we started on a Sunday, and we've grown from 40 people to 95, last year. We're getting the word out and we're touching different areas. People from London and Oshawa come up to Barrie for this tournament. We try to raise the funds.

My biggest thought is that we need awareness. There's this thing where everybody thinks this disease is a disease of the elderly. When I tell them I have Parkinson's, they ask me my age. They don't believe that this is it. It's not a disease of the elderly.

Another thing people think is that your mind is not intact because you have the shake or you can't get the words out of your mouth. You know what you want to say, but everything just stops. They believe that your mind has left you. It hasn't. I've always said that my mind is intact; it's my body that's turning against me. And it is. The trip here today was very, very difficult for me. I've always had family with me to help me, and this is the first time I've done anything without them, so it's been a bit of an adventure for me.

But I'm honoured to be here to let you see what people with Parkinson's go through. This is sort of a mild day for me. There are days when I really can't do a whole lot. I know from the time I get up how my day is going to be. I live on medication. I take medication every three hours to keep me in a better state.

We need the research. We need to find a cure for this. I do not want to have to see or hear of my son or anybody else having to go through this.

With that, I think I'll leave you. I think everything I've said and what you've seen lets you know what is going on.

Thank you for the time.

[The Chair, Conservative, Joy Smith]

I thank you, Mr. McGinnis. I'm very honoured that you would come here today.

This subcommittee is a very special committee, because each and every member in the subcommittee is extremely concerned about brain disorders, neurological disorders, and Parkinson's is a huge piece of that. There are many stories out there like yours, but for you to actually come and talk about what people go through, from the depression to the degeneration of muscles and things like that, it does mean a lot and it helps a lot people. So I want you to know that.

We'll now go into our first round of questions for seven minutes, and we'll begin with Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thanks, Madam Chair.

I'd like to say thank you to all of you.

Mr. McGinnis, I hope you'll thank your son for sharing you with us this morning. You raised so many issues, from awareness to research strategy and urgency. I'm going to try to comment on those.

The European Brain Council is advocating that the EU declare 2013 the Year of the Brain. In March 2013 we will have the Consensus Development Conference, the conclusion of the four-year national population study of neurological conditions, and in October 2013 there will be the World Parkinson Congress in Montreal, with 4,000 delegates from around the world.

I'm wondering if the researchers will comment on whether or not the Government of Canada should declare 2013 the Year of the Brain. It can be used to raise awareness and be a real galvanizing point for awareness, education, research, and dollars.

[The Chair, Conservative, Joy Smith]

Dr. Stoessl, did you want to take that one?

[Dr. Jon Stoessl]

Sure.

I'd be happy to thank you for that and of course speak in support of it. I think we do require a lot more awareness of brain health and brain diseases, because this affects so many people, not only as individuals, but all those around them, with six degrees of separation. I think it's critical, and it's a great opportunity, so thank you.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you.

Perhaps Ms. Gordon can comment on whether we need a national brain strategy--and that would mean working with the provinces and territories--and how the charities are working together. You also talked about your six recommendations, particularly for Parkinson's. Perhaps those can be tabled, as well as the genetic fairness piece, but on the need for a national brain strategy...?