Three things I learned at the World Parkinson Congress, Scotland, 2010

Barbara Snelgrove at World Parkinson Congress

Barbara Snelgrove
Director, Education and Support Services
Parkinson Society Canada

The first thing I learned by attending the World Parkinson Congress, is that Parkinson Society Canada is on the right track and in some areas, leading the way. Our culture is inclusive of people living with Parkinson’s, and that also includes the care partner. Many Parkinson’s organizations do not include them, which means care partners have nowhere to go to find information and support.

The 2010 Congress included people living with Parkinson’s as congress organizers, key-note speakers and workshop leaders. The voice of the person living with Parkinson’s was loud and clear: they are the experts in the lived experience. For example:
“Nothing about me without me!”
“Patient as teachers and as inspiration.”
“The definition of Parkinson’s is a matter of perspective.”

Parkinson Society Canada’s value of empowering people to be involved in managing their condition is also on target. Based on the World Parkinson Charter, our person-centred approach is an emerging trend in models of care also seen in Israel and the Netherlands. The medical model is being replaced by a comprehensive model that focuses on quality of life.

Parkinson Society Canada’s poster presentation on Test your Parkinson’s IQ was a hit! Talking publicly about the motor and non-motor symptoms supports the understanding that Parkinson’s is a complex condition. People with Parkinson’s shared their experience about losing their sense of smell long before their tremor and not knowing what this might mean. Visitors to the poster enjoyed the engaging way of presenting this information and several Parkinson’s organizations asked to duplicate the test for their own use.

It was gratifying to have our work validated and to find partners on the international stage who share our values and commitment to improving the lives of people living with Parkinson’s.

The second thing I learned at the Congress is that research is advancing and expanding our knowledge about Parkinson’s. While it may be true that we have not yet found the Parkinson’s breakthrough, I believe we are breaking down the intricacies of this complex condition. For example:

Genetics. We can no longer call Parkinson’s idiopathic because many genes have been (and continue to be) discovered that play a role. There is still much to learn, for example, some genes are predictive, some may mutate on their own, or when exposed to external forces; some genes can be manipulated to interact with neurons that are involved in Parkinson’s. (Post-Congress we learned of further research in mitochondria and Canadian researchers have been heavily involved in genetics research.)

Pre-clinical/bio-markers. This was a huge research topic throughout the Congress. It is clear that by the time the motor symptoms are evident, it may be too late to impact the damage in the brain. The focus should be earlier detection and identifying what might be early predictors, risk factors or biomarkers. This was evident in research into cell biology, redefining the staging of Parkinson’s to include some of the early symptoms before a clinical diagnosis is made, and, of course, targets for therapeutic intervention.

More than dopamine. Though dopamine impacts motor symptoms, there are many other neurotransmitters involved in the non-motor symptoms; for example, what is the role of a-synuclein in lewy bodies, which is shared with Parkinson’s? Is Parkinson’s disease the same or linked to Diffuse Lewy body disease? What about acetylcholine that impacts cognitive function, a common non-motor symptom in Parkinson’s disease?

Intervention. We have successful treatment of dopamine-related symptoms, but we need to treat the non-motor symptoms that impact quality of life. There is interest in combining drugs with other non-medical interventions, such as exercise and cognitive behavioural therapy.

Exercise was a big topic. While research is not conclusive that it may impact the progression of Parkinson’s, the literature shows that exercise does impact brain function. This is important in a progressive illness because if a person exercises, their level of disability can be reduced. And let’s not forget the impact of creative therapies on emotional health, e.g., dance, music, writing, painting. (Parkinson Society Canada continues to receive submissions to our Creative Expressions web site launched in 2009. Many regional partners also encourage people with Parkinson’s to display their creative talents.)

The theme of the Congress was Bringing the Parkinson’s Community Together and it was successful. Parkinson Society Canada will have the honour of hosting the next Congress in Montreal in 2013 when we will welcome the world to our Canadian stage. I can’t wait to showcase what we will have accomplished by then!

Oh, the third thing I learned while in Scotland… I don’t like haggis!

National Research Program – New awards

As of July 1, 2010, Parkinson Society Canada is proudly supporting 24 new grants, fellowships and student awards:

  • 9 Pilot Project Grants*
  • 4 New Investigator Awards*
  • 3 Basic Research Fellowships
  • 2 Clinical Movement Disorders Fellowships
  • 5 Graduate Student Awards
  • 1 Psychosocial Doctoral Award

In addition, Parkinson Society Canada funds 2 Care Practice in Cognitive Impairment in Aging Grants, in partnership with the Canadian Nurses Foundation, the Canadian Institute of Health Research’s Institute of Aging and Alzheimer Society Canada.

* 2 Pilot Project Grants and 1 New Investigator Award are funded by Parkinson Society British Columbia.

Your research dollars at work

Here are some of the exciting research projects we are currently funding:

Dr. Julianna Tomlinson/Dr. Michael Schlossmacher
University of Ottawa/Ottawa Health Research Institute
Pilot Project Grant
• At the University of Ottawa, researchers Dr. Julianna Tomlinson and
Dr. Michael Schlossmacher are screening existing drugs to see if they lower the amount of a protein called alpha-synuclein in brain cells. Too much alpha-synuclein has been linked to Parkinson’s disease.

Dr. Guy Rouleau
St. Justine Hospital
University of Montreal
Pilot Project Grant
• At St. Justine Hospital, neurologist Dr. Guy Rouleau is searching for genes associated with a disorder that occurs during REM (Rapid Eye Movement) stage sleep, which he believes could be an early warning sign for Parkinson’s disease.

Dr. Nicola Ray
University of Toronto/Centre for Addiction and Mental Health
Basic Research Fellowship
$100,000 over two years
• Neuroscientist Dr. Nicola Ray is using Positron Emission Tomography (PET) to scan the brains of people with Parkinson’s disease, to determine why some people develop pathological gambling problems after taking medication designed to ease their motor function symptoms.

Angela South, Ph.D. student
University of Western Ontario
Lawson Health Research Centre
Graduate Student Award
$30,000 over two years.
• At the University of Western Ontario, speech-language pathologist and Ph.D. student Angela South is studying why people with Parkinson’s disease often have trouble communicating and what impact this has on their lives.

For more information about Parkinson Society Canada’s National Research Program and currently-funded research, visit the Research section of the Parkinson Society Canada web site.


Parkinson Society Canada holds events in Ottawa, Montreal and Toronto to celebrate research . . . recognize grant recipients.
Three recent events were held this Fall to highlight Parkinson’s research in Canada.

Parkinson Society Central & Northern Ontario
1 December 2010 – Helping people with Parkinson’s find the right words, one of five novel research awards granted

Left to right: Ivy Lim-Carter, Director, Research & Clinical Programs, Parkinson Society Canada; Debbie Davis, CEO, Parkinson Society Central & Northern Ontario; Angela South, Dr. Richard Walsh, Dr. Isabelle Boileau, Dr. Nicola Ray and Bruce Ireland, Chair, Parkinson Society Canada.
Left to right: Ivy Lim-Carter, Director, Research & Clinical Programs, Parkinson Society Canada; Debbie Davis, CEO, Parkinson Society Central & Northern Ontario; Angela South, Dr. Richard Walsh, Dr. Isabelle Boileau, Dr. Nicola Ray and Bruce Ireland, Chair, Parkinson Society Canada.

Parkinson Society Quebec
23 November 2010 – Parkinson Society Canada awards record amount of funding to Quebec scientists

Left to right: Andre-Lemelin, Nicole Charpentier, PSQ and grant recipients.
Left to right: André Lemelin, Chair, Parkinson Society Quebec; Nicole Charpentier, Executive Director, Parkinson Society Quebec, Dr. Alexander Thiel, Dr. Jacques Drouin, Dr. Guy Rouleau, Jean-Francois Trempe; Jeremy Vanraamsdonk; Gian-Luca McLelland.

Parkinson Society Ottawa
16 November 2010 – Ottawa scientists zero in on causes and treatment of Parkinson’s through study of proteins, gene mutations and potential drug treatments

Ottawa researchers share $120,000 in grant money.
Left to right: Jean-Pascal Souque, Chair, Parkinson Society Ottawa; Ivy Lim-Carter, Director, Research, Parkinson Society Canada; Dr. Juliana Tomlinson, Dr. Michael Schlossmacher, Mohammad Parsanejad; Dr. David Park; Dennise Taylor-Gilhen, CEO Parkinson Society Ottawa; Joyce Gordon, President & CEO, Parkinson Society Canada.

Larry Haffner receives national volunteer award

Jean Pascal Souque, Johanne and Larry Haffner.
Ottawa citizen Larry Haffner awarded the David Simmonds Parkinson's Leadership Award. Jean-Pascal Souque (r) with Larry Haffner and wife Johanne.

Larry Haffner of Ottawa has been honoured with the David Simmonds Parkinson’s Leadership Award for his extraordinary leadership skills, and for making a significant contribution to the lives of people with Parkinson’s. The award was presented in Ottawa, on November 16, 2010, by David Simmonds, for whom it is named.

Haffner, who was diagnosed with Parkinson’s in 1997, is an original supporter of the Parkinson’s Research Consortium and has generated vital funds to grow the Canadian Parkinson’s research community in Ottawa. He has also served on the board of directors of Parkinson Society Ottawa.

“We are delighted to present Larry Haffner with the David Simmonds Parkinson’s Leadership Award for he exemplifies the exceptional vision, leadership, negotiation skills, perseverance and commitment that have strengthened the voice of those living with Parkinson’s in Canada,” said Joyce Gordon, President and CEO, Parkinson Society Canada.

Parkinson SuperWalk 2010 raises $2.8 million

Parkinson SuperWalk

Parkinson SuperWalk 2010 raised a record $2.8 million. About 14,000 people turned out in 89 communities across the country to raise funds for education, support, research and advocacy on behalf of the over 100,000 Canadians with Parkinson’s. Thanks to everyone who made Parkinson SuperWalk a huge success across Canada.

Congratulations to the National Prize Draw winners:

Grand Prize Draw – Eastern Canada (QC, NB, NL, NS and PE)
42” Sharp Aquos LCD television
• Nancy Benson, St. John’s, Newfoundland

Grand Prize Draw – Ontario
42” Sharp Aquos LCD television
• Andre Motuzas, Chatham, Ontario

Grand Prize Draw – Western Canada (MB, SK, AB, BC)
42” Sharp Aquos LCD television
• Corrine Davis, Calgary, Alberta

SuperStar Walker Draw
60” Sharp Aquos LCD television
• George Papanicolopoulos, Durham Region, Ontario
$500 Roots Card
• Jim Hutchison, Vancouver, British Columbia

SuperWalk Top Fundraiser Draw
$500 Roots gift card
• Bill Andrus, Peterborough, Ontario

Team Challenge Draw
Up to 10 limited edition Roots leather bags
• Trillium Villa Walkers (Team Captain: Cindy Slegers), Sarnia-Lambton, Ontario

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