Archive for September, 2009

Message from the editor

Welcome to the latest edition of E Parkinson Post!

With Parkinson Society Canada poised to look back on almost 45 years of history (2010 will mark our 45th anniversary), we have decided in this issue to highlight some of the things that make Parkinson Society Canada uniquely yours.

We focus on how people with Parkinson’s, their families, volunteers, researchers and clinicians have come together to create a supportive community across the country and how Parkinson Society Canada has become the national organization Canadians with Parkinson’s look to for support, education, research and advocacy.

You will hear from a person with Parkinson’s and two caregivers who can attest to the value of the help and support they receive from Parkinson Society Canada and its regional partners.

We provide a look at our national research program and bring you up to date on the achievements of some of our previously and currently-funded researchers.

There is also an overview of our advocacy efforts on your behalf and links to Parkinson Society Canada’s latest Position Statements which are posted on the website.

Comments, questions and story ideas are always welcome. You can send them to editor@parkinson.ca

We hope you enjoy this issue.

Marjie Zacks
Editor

Parkinson Society Canada – Your Society

Canada’s leading organization for people with Parkinson’s

Whether you live with Parkinson’s, are a family member, friend, donor or volunteer, you have helped make Parkinson Society Canada our country’s only national full service Parkinson organization.

During the past 44 years, people like you, coast to coast, have established 12 regional partner Societies, 235 Support Groups and Chapters who want to make a better life for people living with Parkinson’s through support services, education, advocacy and research.

With the support and funding of many like you, Parkinson Society Canada and its 12 regional partners, are able to provide educational workshops, conferences, a 1-800 national information and referral centre, bilingual print materials and supportive counselling. Our Advocacy initiatives are helping to change policy at all levels of government and are helping identify new voices to speak out on behalf of people living with Parkinson’s.

Our proud tradition of funding Canadian-based research has made us the largest private sector funder of Parkinson’s research in the country and last year, the national research program invested $1.12 million in funding innovative pilot projects, clinical fellowships and studentships for talented young researchers to ensure that Canada continues to engage top scientists in the study of Parkinson’s.

Our initiatives complement the work by other Parkinson organizations such as the Parkinson Research Consortium in Ottawa, Pacific Parkinson’s Research Institute in BC, The Brain Repair Centre in Halifax and the American-based Michael J. Fox Foundation.

Monies raised by PS in Canada remain in Canada and that proud tradition of support, advocacy, education and research in Canada continues as we head toward our 45th anniversary in 2010.

This year’s SuperWalk raised a record $2.46 million so thank you to all those who came out and walked, ran and jogged and to those who supported them. You can feel proud of the role you have played personally in creating a better life and brighter future for Canadians living with Parkinson’s today – a world without Parkinson’s tomorrow. Check out the new SuperWalk brand for 2010 at www.superwalk.com

Our Mission and Vision

Mission

Parkinson Society Canada is the national voice of Canadians living with Parkinson’s. Our purpose is to ease the burden and find a cure through advocacy, education, research and support services.

Vision

A better life with a brighter future for Canadians living with Parkinson’s today. A world without Parkinson’s tomorrow.

Values

People with Parkinson’s first

  • Those we serve are our first priority in all decisions.

Collaboration

  • Work together to achieve our Mission and encourage all voices to be heard.

Compassion

  • Conduct all business in a manner that demonstrates empathy and respect for those living with Parkinson’s.

Creativity

  • Always seek innovative ways to reach our mission.

Transparency

  • Conduct business in a manner that meets the most rigorous scrutiny and practices accountability.

Empowerment

  • We enable Canadians living with Parkinson’s to take action so that they may live fully in their communities as vibrant participants in all that life has to offer.

PSC develops position papers

One of the strategic outcomes for Parkinson Society Canada is to be recognized as a credible and reputable voice for Canadians living with Parkinson’s.  Working collaboratively with our regional partners, we identified four priority topics requiring position statements, which were approved by PSC Board in June 2009.

Read more

Your research dollars at work

National Research Program

Parkinson Society Canada’s National Research Program is a collaboration with our 12 regional Parkinson’s organizations. The success of this national research program depends on the contributions we receive from donors, charitable foundations and other granting agencies. PSC does not receive any government funding.

Our focus

  • 75% of funding is dedicated to biomedical research which focuses on finding a cure.
  • 25% of funding is directed to clinical, health services and systems and population studies.
  • PSC’s psychosocial research stream complements the biomedical research and helps increase our understanding of the quality of life issues that people with Parkinson’s and caregivers face.

Promising areas of research

  • causes of PD
  • complications of PD
  • biomarkers
  • neuroprotection
  • dopamine development
  • psychosocial research
  • cognition and dementia

Selecting projects

All research applications to the National Research Program undergo a rigorous peer review process overseen by the top Canadian scientists in Parkinson’s research who sit on PSC’s Scientific Advisory Board. Only applications with the highest ratings for scientific excellence and relevance to Parkinson’s are chosen for funding. Research grants, fellowships and studentships are awarded through an annual competition.

  • Grants fund expenses associated with conducting a project.
  • Fellowships support the salaries of researchers who have completed doctoral training, such as MD or Ph.D., and who are pursuing specialized training in Parkinson’s.
  • Studentships support salaries of graduate students at the master’s or doctoral level, to attract promising young scientists to the Parkinson’s field at the start of their research careers.

For more information about PSC’s National Research Program and currently-funded research, see:

Award winners for 2009-2011 cycle

National Research Program Biomedical Awards

National Research Program Psychosocial Awards

PSC-funded researchers: Where are they now?

PSC is proud of the many researcher success stories that have resulted from our funding program. In the coming months, we will be taking a look back at those we have funded and will update you on their progress. Here is a small sample of PSC funding success stories.

Dr. Oleh HornykiewiczDr. Oleh Hornykiewicz
Professor Emeritus, University of Vienna (1995)
Professor Emeritus, University of Toronto (1992)

Recipient of an operating grant from PSC in 1982, Dr. Oleh Hornykiewicz is one of the world’s leading neuroscientists and was an early winner of PSC’s prestigious Donald Calne Lectureship. He is best known for his discovery of the dopamine deficit in the brain of people with Parkinson’s disease and the initiation of L-dopa as a treatment for Parkinson’s.

Dr. David ParkDr. David Park
Assistant Dean, Research and Special Projects, Faculty of Medicine, University of Ottawa

Professor, Department of Cellular Molecular Medicine, University of Ottawa and Senior Scientist, Ottawa Hospital Research Institute

Since receiving a pilot project grant in 2003, Dr. David Park has emerged as one of Canada’s most prolific scientists in Parkinson’s. Over the years, he has leveraged $270,000 in grants into $1.67 million in major funding. His current research includes an examination of the role of Pink1, a gene linked to Parkinson’s, in brain cell survival and brain cell death.

Dr. Frédéric CalonDr. Frédéric Calon
Assistant Professor, Faculty of Pharmacy, Université Laval

Dr. Frédéric Calon received a new investigator award from PSC in 2004, and again in 2006, as an independent researcher. He is renowned for his groundbreaking research in new therapies for Parkinson’s. Dr. Calon and his co-investigator, Dr Francesca Cicchetti, also of Université Laval, demonstrated recently, in animal models, that a diet rich in omega-3 fatty acids protects the brain against Parkinson’s disease progression.

Dr. Ekaterina RogaevaDr. Ekaterina Rogaeva
Associate Professor, Neurology Division, University of Toronto and Researcher, Centre for Research in Neurodegenerative Diseases, University of Toronto

In 2005, Dr. Ekaterina Rogaeva received a new investigator award from PSC to do a comprehensive genetic analysis of LRRK2, a novel causative gene for Parkinson’s disease. She is an Associate Professor and independent investigator at the University of Toronto, with a focus on the analysis of genes involved in movement disorders.

Dr. Karim MukhidaDr. Karim Mukhida
Neurosurgeon-in-training, University of Toronto

PSC awarded Dr. Karim Mukhida a basic research fellowship in neurotransplantation, in 2006, to work with world-renowned neurosurgeon and brain repair researcher, Dr. Ivar Mendez at Dalhousie University. Dr. Mukhida has found a potential new way to treat neuropathic pain. In 2010, he will begin a clinical fellowship in the Division of Neurosurgery at Toronto Western Hospital and the University of Toronto, under the supervision of Dr. Andres Lozano.

Dr. Pierre BlanchetDr. Pierre Blanchet
Faculty of Dental Medicine, Université de Montréal
Chair, Parkinson Society Canada Research Policy Committee

Funded as a Clinical Fellow in 1993, Dr. Blanchet worked with the internationally-recognized PD pharmacologist Thomas Chase at NIH, Bethesda, Maryland. Dr. Blanchet established, for the first time, the precise role of the drug amantadine, used for over 40 years to relieve early symptoms of PD.  This older, inexpensive compound now has a completely new role in the treatment of PD. Dr. Blanchet is now Chair of the Research Policy Committee at Parkinson Society Canada.

 

We are proud of the contribution Parkinson Society Canada continues to make to the advancement of the understanding of Parkinson’s. Our support of Canadian researchers in their early years has led to a solid foundation of promising Parkinson’s research in Canada.

Going to bat for people with Parkinson’s

James B.
Eastern Ontario

James B. received valuable advice from PSC’s National Information & Referral Program

James B. received valuable advice from PSC’s National Information & Referral Centre.

When my partner and I bought a property last December, we took out a mortgage with a major bank and were offered mortgage protection. To my surprise, I learned that my application for mortgage insurance was turned down. The reason? Because I have Parkinson’s.

Since I have worked in the insurance industry and know that many decisions are based on life expectancy, I challenged the company’s assumption that Parkinson’s would shorten my life. They said they needed proof from my doctor, so I asked my neurologist to supply a letter.

However, I also called PSC’s Information and Referral Centre. I explained the situation and said that this seemed like discrimination against people with Parkinson’s. She agreed that we should do something about this. She wrote a letter to the insurance company (see below) highlighting recent research that confirms that life is not necessarily shortened by Parkinson’s. She also sent them a copy of PSC’s new Progression of Parkinson Disease information sheet.

Weeks later, I got the good news that the company reversed its original decision and approved both my partner and me for mortgage insurance. I believe that the Parkinson Society’s advocacy, on my behalf, played a big part in bringing about that change.

Excerpt from letter sent by PSC in support of mortgage insurance application:

On behalf of Parkinson Society Canada, Central Northern and Ontario Region, I am taking the liberty of sharing with you our education resource on the Progression of Parkinson’s disease (a copy of which is attached to this letter).

Parkinson’s is a complex neurological condition. While symptoms will worsen over time, it is difficult to estimate how quickly or slowly it will progress in each person. Depending upon age of onset, general health, and symptom management, a person with Parkinson’s can live an active life. In most cases, one’s life is not shortened.

Research as current as March 9, 2009 concluded the survival rate among people with Parkinson’s is the same as for the general population. More information on the research can be found online at www.pdf.org/en/science_news.

Support groups: a place for learning and sharing experiences

Hazel Berkan
Regina, Saskatchewan

Hazel & Floyn Berkan

Hazel & Floyd Berkan

My husband Floyd and I were encouraged to join the Regina Support Group by the education coordinator, Else Manz, who was our neighbour at one time.

In the two years that we have been members, we have found the monthly meetings to be very helpful. We like the fact that they bring in speakers, including neurologists, so we’re able to ask questions and get answers on topics we’re interested in, such as diet or what foods interact with Parkinson’s medications.

The Parkinson Society has helped me understand Parkinson’s disease better and get support. Even talking to the doctor is different because when you’re at the meetings you hear about other people’s experiences, so you know the kinds of topics to raise with the doctor and what questions to ask.

My husband goes to the exercise program for people with Parkinson’s. As a caregiver, I get to participate as well. The physiotherapist changes the routines from week to week so we get a good workout all-round. The exercise program is something my husband and I can do together and we both benefit.

Betty Lou Earl
Regina, Saskatchewan

Caregiver Betty Lou Earl with her mother Cecilia is grateful for ongoing support from Parkinson Society Saskatchewan.

Caregiver Betty Lou Earl (left) with her mother Cecilia, is grateful for ongoing support from Parkinson Society Saskatchewan.

When my mother was diagnosed over 10 years ago, she was functioning on her own and independent. But as her Parkinson’s progressed, I felt I didn’t know how to help her, so I looked in the phone book to see if I could get connected with a support group. That was about five years ago.

For me, the number one reason for being in a support group is the education – the fact that you learn how to cope with the disease and how to help the person as much as you can, as a caregiver. Today, I’m just so much more knowledgeable about Parkinson’s.

Right now, my Mom’s throat and swallowing are starting to be affected but I have learned that it’s the Parkinson’s that is causing this so I’m able to talk to her about it and help her. Also, my Mom is in a home now, and when she is having difficulties, I feel confident that I can talk knowledgeably to the healthcare staff and sometimes even give them information.

But education is just one part of it. The support group has become a major part of my life because everyone there understands what I’m going through and I understand what they’re going through. Just having that connection is very comforting.


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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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