Message from the Editor

Marina Joseph, Editor

Marina Joseph, Editor

Welcome to the first issue of eParkinsonPost for 2015, marking a milestone. This year, we celebrate the 50th anniversary of Parkinson Society Canada (PSC), 50 years of providing support and education for people living with Parkinson’s, advocating on their behalf and funding research to unlock the mysteries of this complex disease.

Since the creation of the National Research Program (NRP) in 1981, PSC has invested more than $24 million in 450 awards, fellowships, and grants that have revealed more about diagnosing and treating Parkinson’s disease and advanced our knowledge towards a cure. In this issue, we highlight NRP funded researcher Jacques Drouin, D.Sc., who recently uncovered a mechanism regulating dopamine levels in the brain. This is quite a breakthrough in Parkinson’s research.

While we reflect on our history and accomplishments, we are committed to our vision for a better life with a brighter future for Canadians with Parkinson’s. We are currently asking individuals in our community to help improve access to the new Parkinson’s medication NEUPRO®. We ask you to consider joining our Parkinson’s Ambassador Network and lend your voice to improve quality of life for people living with Parkinson’s, their families and care partners.

We also rally our community to make sure Parkinson’s issues are being heard by all candidates, government representatives and policy makers. Recently, Parkinson Society Canada President and CEO Joyce Gordon, testified before the Senate Standing Committee on Human Rights in support of Bill S-201, an Act to prohibit and prevent genetic discrimination, and implement genetic fairness legislation. Issues of privacy and genetic discrimination were heightened last fall when the personal genetics company 23andMe began selling their service in Canada. We encourage you to find out what you need to know to protect yourself and your family.

Throughout the year, we will shine the spotlight on Parkinson’s pioneers across the decades. We hope you will post a comment, or contact us at communications@parkinson.ca to share your stories and tell us about some of the individuals who have made a difference in your Parkinson’s journey. Together, we are putting Parkinson’s on the map.

Putting Parkinson’s on the Map: Our first 50 Years

02_SINCE1965_SEAL_COLOUR_WEBSince 1965, Parkinson Society Canada (PSC), together with its regional partners, has reached into cities, towns and rural areas across the country to provide education and services, to lobby governments and create a National Research Program. We have truly put Parkinson’s on the map through heightened awareness and scientific discoveries, not only in Canada, but also around the world.

From our beginning as a single entity, the Canadian Parkinson’s Disease Association, we have grown to more than 250 chapters and support groups, working with regional partners from coast to coast. We are the national voice for Canadians living with Parkinson’s.

Then and Now

Throughout 2015, we will highlight our history, our accomplishments, and the pioneers who have moved the Parkinson’s cause forward. From leaders to front-line volunteers and from corporate supporters to researchers, thousands of dedicated people have helped raise awareness and improve the lives of those living with Parkinson’s.

One of those individuals was Dr. André Barbeau of Montreal, the internationally recognized neurologist who, in 1960, initiated research that demonstrated Parkinson’s resulted from a dopamine deficit. Dr. Barbeau was among the inaugural Directors attending the first meeting of the Canadian Parkinson’s disease Association in Toronto, along with the mayor Charles Mortimer, Q.C., and another Parkinson pioneer Dr. Ronald Tasker.

For more than four decades, levodopa has been widely available as the gold standard treatment for Parkinson’s disease. During this time, research into diagnosis, causes, complications and treatments has exploded. Research is incremental and methodical, and scientists are making headway to better understand the causes and progression of this complex disease, while moving closer to finding a cure. A subsequent issue of e-Parkinson Post will highlight some of the breakthroughs made by National Research Program funded researchers.

In 1981, PSC awarded the first research grant of $150,000 to Dr. Clement Young of Toronto Western Hospital/University of Toronto. Since then PSC has invested more than $24 million through the National Research Program to fund 450 awards, fellowships, and grants that teach us more about causes, biomarkers, neuroprotection, complications and treatments.

It’s been almost 200 years since James Parkinson wrote his 1817 Essay on the Shaking Palsy. Much of his essay commented on the lack of effective treatments available. In an article on Dr. Parkinson, author Dr. Patrick Lewis comments: “I think James Parkinson would marvel at the progress that has been made in diagnosing, understanding and treating the condition that now bears his name.”

We marvel too at the personal strength, courage and optimism demonstrated by Canadians living with Parkinson’s. And we are grateful for the ongoing support of our donors and volunteers who make our mission possible, including providing information and support through the National Information and Referral Centre, and educating the public and health professionals through webinars, websites, social media channels and publications. We advocate for social benefits, access to treatments, research funding and genetic fairness. We raise funds to invest in education, support groups and our National Research Program. We developed and distributed the first Canadian Guidelines on Parkinson’s Disease, written collaboratively by neurologists and movement disorder specialists from across Canada, with input from people with Parkinson’s, surgeons, family physicians, nurses, allied health professionals, and Parkinson Society Canada to provide a consistent standard for health care professionals to diagnose and treat their patients.

At the heart of every great discovery is a personal story. We hope you will connect us with other Parkinson pioneers that have made a difference to you and others. Throughout our 50th anniversary year, we would like to share these stories, memories and anecdotes of living with Parkinson’s with our audiences. Tell us about the changes you’ve seen or accomplishments you’ve witnessed. And tell us how Parkinson Society Canada has been there for you. Post a comment below this article, or get in touch at communications@parkinson.ca, follow us on Facebook or tweet us @ParkinsonCanada and we’ll follow up.

Researchers uncover a mechanism regulating dopamine levels in the brain

Jacques Drouin, D.Sc.

Jacques Drouin, D.Sc.

Researchers in Montréal, led by Jacques Drouin, D.Sc., recently uncovered a mechanism regulating dopamine levels in the brain by working on a mouse model of late onset Parkinson’s disease. The study, conducted in collaboration with Dr. Rory A. Fisher from the department of pharmacology at the University of Iowa Carver College of Medicine, was published online by the scientific journal PLoS Genetics.

Using gene expression profiling, a method to measure the activity of thousands of genes, researchers investigated dopaminergic neurons in the midbrain, which are nerve cells that use dopamine to send signals to other nerve cells. These neurons are known to degenerate in Parkinson’s disease.

“The present work identified a cell signaling component, Rgs6, that is also restricted to the sensitive neurons in the midbrain and that exerts a protective function, particularly late in life,” explains Dr. Drouin, Director of the Molecular Genetics laboratory at the IRCM (Institut de recherches clinques de Montréal). “We had previously shown that this gene is itself controlled by a particular protein, known as PITX3, which plays an important role in the survival of these neurons.

“Through our study, we discovered that a defective Rgs6 gene causes the death of these neurons,” adds Dr. Drouin. “More specifically, we found that when we remove the Rgs6 gene, this relieves a brake against excessive dopaminergic signalling. As a result, excess free dopamine accumulation causes cellular stress, which, in turn, causes the neurons to die. While the loss of Rgs6 function may predispose or contribute to Parkinson’s disease, its stimulation may provide a
new target for the development of drugs against Parkinson’s disease.”

Drouin’s research was supported by the Canadian Institutes of Health Research (CIHR) and by Parkinson Society Canada. This latest discovery is built upon the results of an earlier pilot project to identify the genes targeted by PITX3, funded by Parkinson Society Canada’s National Research Program with a one year pilot project grant of $45,000.

Drouin got his first taste of the importance of research and what he calls “the beauty of proteins and what they do” when he was still in high school in Quebec City. He got a part-time job at a research lab at Laval University.

“That got me reading,” Drouin says. “That’s when I saw the first papers that described protein structure and linked them with their function. The fact that you could explain biology through the structure of proteins was quite startling to me.”

Drouin chose a research career in molecular genetics and biology because of his love for charting previously unknown scientific territory. He particularly enjoys discovering new structures in the brain, and the way different pathways work.

About Jacques Drouin, D.Sc.
Jacques Drouin obtained his Doctor of Science in Physiology from Université Laval. He is an IRCM Research Professor and Director of the Molecular Genetics research unit. Drouin is Research Professor in the Department of Biochemistry at the Université de Montréal. He is also associate member of the Department of Medicine (Division of Experimental Medicine), adjunct professor of the Department of Anatomy and Cell Biology, and adjunct member of the Department of Biochemistry at McGill University. In addition, he is an elected member of the Academy of Sciences of the Royal Society of Canada.

Help improve access to a new Parkinson’s medication

04_Neupro-article-imageDo you use the Parkinson’s treatment NEUPRO®? If so, we would like to hear from you.

Parkinson Society Canada is looking to make a stronger case to the Canadian Agency for Drugs and Technologies in Health (CADTH) on the need for Canadians affected by Parkinson’s to have access to the new Parkinson’s treatment NEUPRO®.

We will be interviewing members of our community about their experiences with this treatment. Whether you are directly affected, or you are a caregiver of someone with Parkinson’s and taking NEUPRO®, your input is crucial in our efforts to improve access to this treatment.

The NEUPRO® patch is a dopamine agonist used for the treatment of Parkinson’s disease and restless legs syndrome. It works by delivering a steady stream of Parkinson’s medication over a 24-hour period through the surface of your skin from the once-a-day applied patch, effectively diminishing the need for repeated dosing throughout the day.

If you would like to share your experiences on NEUPRO®, please contact us at advocacy@parkinson.ca and provide your name, email address and a phone number where you can be reached. We will then contact you to arrange a time to speak with you at your convenience. These confidential discussions should take about 10 to 20 minutes.

Parkinson Society Canada thanks all members of our community for contributing their feedback on the use of NEUPRO®. The results of our submission to CADTH will be shared with you in the near future.

Privacy Policy: To ensure personal privacy and confidentiality, individual responses will not be identifiable. It is important to note that selected quotations may be used without reference to an individual’s name.

Become a Parkinson’s Ambassador in your riding

Joyce Barretto, Chair, National Advocacy Committee

Joyce Barretto,
Chair, National Advocacy Committee

Do you want to make a difference in the lives of Canadians affected by Parkinson’s disease? Do you feel that there are issues and concerns that are going unheard by government and policy makers? If you answered yes to either of these questions, you should consider joining our Parkinson’s Ambassador Network and help end this silence.

“If you have that personal connection, be it a family member or friend, I invite you to make a difference in the lives of Canadians with Parkinson’s,” says Joyce Barretto, Chair of Parkinson Society Canada’s National Advocacy Committee.

Barretto’s deep commitment to the cause comes from her mother, who has been living with Parkinson’s for more than 18 years.

As a representative of the Parkinson’s community, you will meet with your local MP to discuss issues impacting the Parkinson’s community, in advance of the 2015 federal election and beyond. You will be a vital part of our Ambassador Network, made up of dedicated volunteers doing the same thing in ridings across the country.

Who are we looking for?

  • People with passion
  • People living with Parkinson’s and their caregivers
  • Relatives, friends and acquaintances affected by the disease
  • Those who are comfortable with public speaking and meeting with elected officials, hopeful candidates and other key community members
  • People who have some advocacy experience – though not required, would be a strong asset

Parkinson Society Canada provides training and support to Ambassadors, to ensure that they are fully prepared for the election campaign. Parkinson’s Ambassadors will also have opportunities to participate in other national and/or provincial advocacy initiatives beyond the 2015 federal election.

“I invite you to be a voice for change and a champion in your community to get our Parkinson’s message heard,” encourages Barretto.

If you are interested in being a Parkinson’s Ambassador or have further questions about this exciting opportunity, please contact Justin Manuel, Coordinator, Public Affairs and National Programs, by email at justin.manuel@parkinson.ca or by phone at 1-800-565-3000, extension 3478. For more information on the Parkinson’s Ambassador Network, as well as our other advocacy initiatives, please visit our website.

Personal genetics company 23andMe in the news

2014-09-24-research A saliva-based DNA service providing genetic reports based on ancestry and family history, 23andMe, recently announced a $60 million deal with Genentech for access to data on people with Parkinson’s. 23andMe’s personal genetic testing kits were approved for sale (at $199 per kit) in Canada last fall.

With the assistance of the Michael J. Fox Foundation, 23andMe has recruited 12,000 people with Parkinson’s (offering the kits free of charge) and will provide access to Genentech to 3,000 of those tested, who have agreed to donate their DNA for research purposes. It’s not known how many of these participants are Canadians. Genentech will need to follow up with research subjects to obtain further health information and/or medical records. It plans to conduct research into new targets for Parkinson’s drugs and diagnostic tests.

In late 2013 the U.S. FDA (Food and Drug Administration) told 23andMe that it could no longer return health information to its customers, out of concern that the information wasn’t accurate. Deemed a medical device in the U.S., 23andMe was ordered to cease providing medical information in its reports to consumers. Health Canada has determined that the kits are not therapeutic, so it only regulates the safety of the collection kit itself, not how the information from the genetic tests is reported and used.

Unlike the United States, Canada does not have genetic privacy or discrimination legislation. Consumers in Canada are vulnerable to discrimination and should be aware that there is no legislation that protects Canadians who participate in genetic research or undergo genetic testing. In the United States, Americans are protected under The Genetic Information Nondiscrimination Act (GINA). However, for Canadians, there is potential risk to their privacy as well as insurance and employment implications.

Parkinson Society Canada (PSC) is addressing these potential risks, advocating to protect Canadians against genetic discrimination. In December 2014, PSC President & CEO Joyce Gordon testified in favour of genetic fairness legislation to the Senate Committee on Human Rights. You can learn more about this advocacy work here.

In addition to privacy and discrimination issues, Canadians living with Parkinson’s disease and their families should be aware that 23andMe’s testing kits cannot confirm a Parkinson’s disease diagnosis. Only your physician or neurologist can make a diagnosis.

To find out more about Parkinson Society Canada’s advocacy efforts and results, visit the Advocacy Centre at www.parkinson.ca.

Canada needs genetic fairness legislation to protect against discrimination by insurers and employers

Joyce Gordon, President and CEO, Parkinson Society Canada.

Joyce Gordon,
President and CEO,
Parkinson Society Canada.

“We need to address the privacy, ethical, health and economic issues surrounding genetic information to put safeguards in place. Legislation in this area is imperative and the neurological community asks the Government of Canada to enact legislation to protect Canadians from genetic discrimination to ensure genetic fairness,” said Joyce Gordon, President and CEO, Parkinson Society Canada and Chair, Neurological Health Charities Canada and Canadian Coalition for Genetic Fairness.

This was the concluding statement made by Joyce Gordon in her December 10, 2014 presentation to the Senate Standing Committee on Human Rights on Bill S-201, An Act to prohibit and prevent genetic discrimination. Along with several others, Gordon testified on behalf of those with Parkinson’s disease and other neurological conditions, in favour of genetic fairness legislation.

Canada is moving forward with genetic-based initiatives, such as personalized medicine and research through Genome Canada, yet it remains the only G7 country without formal provisions in place to protect Canadians from genetic discrimination. Outdated laws enable insurance companies to discriminate based on perceived disability or the prospect of future disability. They can use genetic information to determine eligibility, set premiums and manage their risks. The potential exists for employers to also discriminate based on a future perceived disability. Today, insurers and employers can legally ask a person if they have undergone genetic testing and, if so, request the results.

While genetic testing and research can yield many benefits in developing medical treatments and personal efforts to reduce health and financial risks, many choose not to undergo genetic testing. Gordon related the following story to the Senate Committee:

‘My father, aunt and second cousin were all diagnosed with Parkinson’s disease and my sisters and I were interested in receiving genetic testing to see if we have the gene associated with Parkinson’s. However, because we fear our children will be at risk of discrimination should a possible link be found and that we may have difficulty receiving insurance, we decided against any genetic testing based on the potential negative impacts it could have.’

Genetic information is personal, complicated and often misunderstood. For instance, the vast majority of Parkinson’s cases are sporadic, with no identifiable cause, and only five to 10 per cent of the Parkinson’s community is affected by a genetic form of the disease. In addition, different genes can cause the same disease, and a massive 95 per cent of the time one disease is actually the result of interplay among genes. For example, there are 28 distinct chromosomal regions related to Parkinson’s. Yet we currently allow insurers and employers to apply their own analysis and formulas to interpret genetic testing results and discriminate against Canadians.

Canada’s lack of genetic fairness legislation is a barrier to citizens participating in health research, including personalized medicine initiatives. And, genetics is a vital area of Parkinson’s research, offering the hope of finding a cure and better treatments.

“Canada must put legal safeguards in place, so that we can fully realize the benefits of genetic research and testing without the negative side-effects of discrimination,” says Gordon.

You can read Joyce Gordon’s full presentation or watch it online. Private Member Bill S-201, an Act to prohibit and prevent genetic discrimination, is currently in its second reading in the Senate, and is being reviewed by the Senate’s Standing Committee on Human Rights. We urge you to ask your senator to support Bill S-201. For more information on how to connect with your Senator, click here.

In the meantime, Parkinson Society Canada will continue to keep you apprised of the progress in the legislation and to advocate for genetic fairness on behalf of all Canadians living with Parkinson’s and their families.


Charitable registration number 10809 1786 RR0001
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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