Message from the Editor

Marina Joseph, Editor

Marina Joseph, Editor

April is Parkinson’s Awareness Month and during this 50th anniversary year, more than ever we are determined to put Parkinson’s on the map. While the global quest for a cure continues, closer to home Parkinson Society Canada representatives will meet with key policy makers in Ottawa to present the key priorities of the Parkinson’s community to the federal government. And volunteer Parkinson Ambassadors will mobilize across the country to advocate for key issues that matter to them and their families.

In this Parkinson’s Awareness Month issue, we demonstrate how the National Research Program is helping to grow Parkinson’s researchers. Read how Dr. Jean-François Trempe is pursuing new knowledge and potential treatments for Parkinson’s with support from the National Research program. You may also enjoy learning about Neuroscientist Jessica Grahn and her work involving listening to music to help people with Parkinson’s improve their stride and move faster as they walk.

We also share feedback from family physicians, specialists and allied health professionals who are turning to PSC for accredited education through our first online learning module  based on the Canadian Guidelines on Parkinson’s Disease.

And we are pleased to report that the government has added Parkinson’s disease to the Canadian Chronic Disease Surveillance System (CCDSS), an ongoing database that will give researchers, medical practitioners and policy makers access to a wide range of substantive data on Parkinson’s.

These advances in education, advocacy and research would not be possible without the dedication of thousands of supporters, including those who take part in Parkinson SuperWalk, launching today. Community spirit across the country has helped this national event reach its 25th anniversary this year.

In this year of anniversaries, we salute everyone who continues to pursue our vision of a better life with a brighter future for Canadians living with Parkinson’s today and a world without Parkinson’s tomorrow. We are grateful to be on this journey with you.

Growing a scientist

Dr. Jean-François Trempe and his wife Véronique Sauvé in earlier days in Oxford. Both were lead authors on a significant paper on Parkinson’s disease research, published in Science in 2013.

Dr. Jean-François Trempe and his wife Véronique Sauvé in earlier days in Oxford. Both were lead authors on a significant paper on Parkinson’s disease research, published in Science in 2013.

For Dr. Jean-François Trempe, building a research career is a life-long passion and a family affair. With funding from Parkinson Society Canada National Research Program, Dr. Trempe, 37, along with his wife Véronique Sauvé, were the lead authors on a significant paper related to Parkinson’s disease published in Science in 2013.

The two McGill researchers, collaborating with teams directed by Dr. Edward (Ted) Fon and Dr. Kalle Gehring, unlocked a new door to developing drugs to slow the progression of Parkinson’s disease. The paper described the three-dimensional structure of the protein Parkin. Mutations in Parkin cause a rare hereditary form of Parkinson’s disease and are likely to also be involved in more commonly occurring forms of Parkinson’s disease. The Parkin protein protects neurons from cell death due to an accumulation of defective mitochondria. Mitochondria are the batteries in cells, providing the power for cell functions. This new knowledge of Parkin’s structure has allowed the scientists to design mutations in Parkin that make it better at recognizing damaged mitochondria and therefore possibly provide better protection for nerve cells.

When the work on the Parkin structure was underway, Dr. Trempe was a post-doctoral fellow funded by the PSC National Research Program. “In the same way that a picture is worth 1,000 words; a structure is like 1,000 experiments,” says Dr. Trempe explaining the significance of the Parkin structure discovery.

Dr. Edward Fon, Chair of PSC’s Scientific Advisory Board and Director, McGill Parkinson Program, first met Dr. Trempe when he was working in Dr. Gehring’s lab. “What struck me was how J-F (Jean- François) stepped right up and took responsibility for this collaborative Parkin project,” he says. “He’s also unique in that he’s not limited by his own field of structural biology, but is able to add other dimensions, such as cell biology, to complement his background and harness both areas to take research into new directions.”

The publication in Science has been a turning point in the career of this promising young researcher, and one of the most significant discoveries to come out of a Parkinson Society Canada National Research Program funded project. Recently, Trempe has been invited to present his work to Parkinson researchers and drug developers at international conferences. “These were great opportunities to exchange ideas and discuss our work with other researchers in the Parkinson’s field.

And last year, Trempe established his own lab at McGill University, employing two graduate students, one post-doctoral fellow and a research technician. Undergraduates also work and study in the lab as part of their training. Trempe received a New Investigator award of $90,000 over two years, through PSC’s National Research Program. This support meant he could hire the post-doctoral fellow in his lab.

Currently Dr. Trempe’s team is studying the structure and shape of PINK1, a protein that plays a critical role in familial Parkinson’s disease. About 10 per cent of people with Parkinson’s have a genetic form of the disease. Learning the shape of this protein could help develop a drug to repair the protein when it is damaged, to help it do its job of keeping brain cells healthy.

“PINK1 activates Parkin,” explains Trempe. “Once we have the structure for PINK1, I’d like to build on our work on PINK1 and Parkin towards drug development.”

How does a young scientist get to the point of ground-breaking discoveries? For Trempe there was an early interest in science, followed by undergraduate and graduate degrees in biochemistry. From 2002 to 2007, he studied at Oxford in the United Kingdom, under renowned researchers Dr. Jane Endicott and Dr. Iain Campbell – who pioneered the use of NMR (nuclear magnetic resonance) to determine protein structures.

“It was an inspiring and a very collegial place to study and work,” says Trempe, “with everyone sharing information.”

He found a similar spirit of collaboration, when he returned to Canada and worked with Drs. Gehring and Fon at McGill. “They are both very open to collaboration and work to expand our knowledge of Parkinson’s and to help their patients,” Trempe said. In turn, Dr. Fon found Trempe had a “true passion for science. He is enthralled by figuring out how things work.”

Why Parkinson’s research? “It’s still such a medical mystery. We still don’t know why some people get it. We still don’t know the cause, or causes. For me, there is the curiosity, to find the answers to those questions. And of course Parkinson’s is a huge and growing burden, for the people living with it, and as a pressing health issue for society,” Trempe says.

Since he began his research on Parkinson’s, Trempe has had more exposure to people living with the disease, through Dr. Fon, who regularly talked about cases and at Parkinson Society events. “Listening to patients is something of a reality check and helps motivate you in your work. You realize the potential impact your research may have,” says Trempe.

Working with Dr. Fon also helped Trempe recognize that not all people with Parkinson’s are the same; that there is a wide spectrum of the disorder with seemingly various sub-types and categories. “We need more data on individuals, and it’s difficult to accomplish this with limited resources.”

In addition to a commitment to scientific rigour, working with Dr. Fon taught Trempe the importance of good communication skills. “It’s not enough to acquire the knowledge, you need to share it with others, in excellent papers and presentations,” Trempe says.

And the funding process today demands both scientific rigour and communication skills. “Not only do you need to publish great papers and write funding proposals, you need to explain the impact of your research – for further research and towards the ultimate goals of better treatments and a cure.”

It’s all about building a reputation for excellence. Trempe acknowledges that earlier funding from PSC’s National Research Program has helped him develop this reputation. Discovering the structure of Parkin helped him acquire further financial assistance to keep trying to unlock the mysteries of Parkinson’s. He has since received funding from McGill to establish his own lab and was awarded the Canada Research Chair in Structural Pharmacology, worth $100,000 over five years. He’s cautiously optimistic about a funding application to the CIHR for a “substantial” sum. And, he has received the latest funding from PSC for the PINK1 project.

“The funding from the Parkinson Society Canada has been essential,” says Trempe. “Not only have we made great strides in our knowledge, but we are developing young scientists and other funders recognize the potential of our endeavours.”

Dr. Fon, who chairs PSC’s Scientific Advisory Board, says one of the research program’s goals is to draw people into the field of Parkinson’s research. “Our fellowships, pilot project grants and other awards, can be critical in attracting scientists like J-F to apply their talents to Parkinson’s.”

“I see my work expanding beyond structural studies to biophysical studies and drug development, as well as continuing with basic science,” says Trempe. “We still need to pursue the basics to understand various phenomena.”

“And our progress is accelerating,” explains Trempe. “I believe we are on the right track and that advances will continue to be made.”

To learn more about Dr. Jean- François Trempe’s current project funded by Parkinson Society Canada National Research Program, visit online at www.parkinson.ca.

You can help us continue to support researchers like Dr. Trempe, by making a donation today to Parkinson Society Canada and its National Research Program.

Health professionals are paying it forward with Parkinson’s learning module

Online education tool for physicians helps identify Parkinson’s signs and symptoms.Health professionals across Canada, and even internationally, are completing Parkinson Society Canada’s (PSC’s) first online learning module based on the Canadian Guidelines on Parkinson’s Disease and then recommending it to colleagues and using the information at professional seminars and in classrooms.

Joanie Gourde-Bellerose, Pharm, D., works in a busy pharmacy in Abitibi, Quebec. She also teaches nursing degree students at a local university.

“Although our community only has the services of one neurologist, we’ve recently had about four new patients diagnosed with Parkinson’s. I took this online learning module to review any new treatments,” she says. “It was also very valuable when I was preparing a lesson on Parkinson’s treatments for my nursing students. I’ll be recommending the program to them.”

Gourde-Bellerose also believes the program would be of great benefit to family physicians. “It often takes a while to see a specialist, so if the family physician can begin the process of diagnosis and treatment, the patient can get symptom relief that much more quickly. As well, the family physician can follow the progress of their patient with a true understanding of the knowledge at hand and work more closely with the specialist,” says Gourde-Bellerose.

Dr. Andrés Venegas is one of those specialists – a neurologist – who trained in Calgary for two years and now practices in Mexico, his native land. Earlier this month he was invited to give a lecture to family physicians in his community. His advance preparation led him to the PSC website developed for healthcare professionals, and the learning module.

“I thought it would be a useful training tool for family physicians and general practitioners – and it was,” he said. “My lecture to about 70 doctors was a great success.”

Dr. Venegas has translated some of the guidelines and adapted them to the local health system and resources, which were well received in his health care community. Ultimately, it is the people living with Parkinson’s who benefit the most when health care professionals have the latest knowledge.

Since the module launched last December, about 25 per cent of those who received a personal email announcing the training opportunity, have registered and completed the module. It is based on the recommendations in PSC’s Canadian Guidelines on Parkinson’s Disease and has been accredited by the College of Family Physicians of Canada for continuing medical education credit. It is currently available to all allied health professionals at no cost.

The module uses case scenarios accompanied by questions and answers throughout the session making it an interactive and effective learning tool. The module focuses on how to identify, treat and manage the motor and non-motor symptoms of Parkinson’s disease.

We encourage you to pass along this information about this accredited learning module to your professional colleagues and to the members of your health care team. If you have completed the module and would like to provide feedback, contact Grace.Ferrari@parkinson.ca, National Manager, Public and Professional Education.

Music, movement and their connection in the brain

04_Grahn_Music_movement

Jessica Grahn

Neuroscientist Jessica Grahn already knows that listening to music helps people with Parkinson’s disease lengthen their strides and move faster as they walk, instead of freezing in place. What she doesn’t know is why music helps, and what regions of the brain it stimulates. A psychosocial research grant of $100,000 over two years, from PSC’s National Research Program will enable her to explore the possibilities.

Using functional Magnetic Resonance Imaging (fMRI), Grahn, an assistant professor at Western University’s Brain and Mind Institute in London, Ontario, is investigating the specific pathways and connections in the brain that link sound and movement, to pinpoint the regions of the brain that are involved.

Grahn will scan the brains of people with Parkinson’s disease while they are listening to their favourite music. At the same time, they will flex their feet on levers to move a representation of themselves through a virtual environment displayed via goggles.

“That’s as close as we can get to real walking while you are lying down in an fMRI scanner having your brain imaged,” says Grahn.

Grahn is testing the theory that music acts as an external timing cue to tell people when they should move; using motor systems in the brain that are unaffected by Parkinson’s to compensate for the systems that are damaged and impede movement and timing. Alternatively, music may trigger activity in the pleasure/reward centres in the brain. These reward centres may also be connected to areas of the brain that control movement, but were previously dormant until they were needed to compensate for depleted brain cells.

The brain scans will help Grahn and her colleague determine which pathways in the brain are involved for each individual – pathways that may differ depending on the individual’s music selections. They will also measure people’s gaits before and after listening to their chosen music.

The project’s goal is to optimize the use of music and particular songs, based on the brain activity Grahn observes, to see if that will get people to take longer strides and to move faster, to overcome freezing in place and preventing falls. Both freezing and falling often keeps people with Parkinson’s disease at home, afraid to go out and interact socially.

“Overall, we’re trying to improve mobility and independence,” she says.

If Grahn’s research is successful, it could provide physiotherapists and occupational therapists with some easy methods to help people with Parkinson’s socialize and enjoy a better quality of life.

Check out the profiles of the 27 other researchers and their projects, being funded by PSC’s National Research Program during 2014-2016.

Government takes a big step forward to address the needs of the Parkinson’s Community

05_CCDSS_-tracking-of-PD_Health Canada and the Public Health Agency of Canada (PHAC) are adding Parkinson’s disease to the Canadian Chronic Disease Surveillance System (CCDSS). The decision to include Parkinson’s disease in the CCDSS is a result of Parkinson Society of Canada’s direct involvement in the recent National Population Health Study of Neurological Conditions. This welcome development will give researchers, medical practitioners and policy makers access to a wide range of substantive data on Parkinson’s.

“The decision to add Parkinson’s to the CCDSS indicates that our concerns are being taken seriously by policy makers,” says Joyce Gordon, President and CEO, Parkinson Society Canada. “And the valuable data collected and reported will enable all stakeholders to make evidence-based decisions in support of those living with the disease.”

The CCDSS, in partnership with the federal government and PHAC, is a database of provincial, territorial and federal administrative information, which includes data on physician billing, hospitalization and resident registry databases.

This database contains key medical indicators relevant to those living with Parkinson’s, dating back to 2000. PHAC has assured Parkinson Society Canada that the first report on these indicators will be available within five years, although it could be available sooner. The report and the data collected will foster greater dialogue and knowledge transfer about Parkinson’s in terms of public policy, clinical guidelines and research.

Parkinson Society Canada is looking forward to gaining access to the information in the first report and sharing the results with the Parkinson’s community. In the meantime, we will continue to work closely with the Public Health Agency of Canada to advance its understanding of Parkinson’s disease and the needs of Canadian’s living with Parkinson’s, their families and their care providers.

Community spirit helps Parkinson SuperWalk hit the 25-year mark

Amanda Mulder, à droite, avec son amie Nicole, se fait photographier lors de la Grande Randonnée Parkinson de 2014 à London, Ontario. Amanda a pris part à cet événement pour souligner la mémoire de son grand-père John Steenbergen.

Amanda Mulder, right, with her friend Nicole, pause for a photo during the 2014 Parkinson SuperWalk in London, Ontario. Amanda took part in honour of her grandfather John Steenbergen.


Back in 1990 when seven members of the Toronto (Ontario) Chapter held the first SuperWalk, it’s likely that they dreamed about bigger success in the future. Twenty-five years later, after steady growth, Parkinson SuperWalk inspires participation by more than 14,000 walkers and volunteers in more than 115 communities from coast to coast.

Thousands more Canadians sponsor walkers in support of Canadians living with Parkinson’s, raising funds for support services, education, advocacy and research. Last year’s SuperWalk raised more than $2.9 million. This year’s Parkinson SuperWalk has a nation-wide goal of $3 million and takes place on the weekend of September 12 and 13. National sponsors for 2015 Parkinson SuperWalk are Naturegg Burnbrae and Roots Canada.

We are very proud to be a long-standing community partner of Parkinson SuperWalk,” says Margaret Hudson, President of Burnbrae Farms. “We applaud the contributions of the everyday heroes who inspire hope in the tens of thousands of Canadians living with this disease, as well as their families and care givers.”

One of those everyday heroes is Amanda Mulder, 23, who hobbled through last year’s SuperWalk in London, Ontario on crutches, in remembrance of her grandfather John Steenbergen, who lived with Parkinson’s. He died in 2013 at 80 years of age.

“We had a special bond,” she says. “He understood me and I understood him. He was my rock, and I loved him more than I ever thought possible. He had Parkinson’s disease for 10 years and I saw how hard it was on him.”

Last year, Amanda raised $570 with the generous support of her family and friends. This September, she hopes to run the route in London, as long as her leg is fully recovered. And, she’ll be calling on the support of her family and friends once again to sponsor her efforts – or join her in the event.

Amanda received an added bonus for her efforts last year; she won one of the national draw prizes – a 60-inch Sharp AQUOS® LCD television. And while she’s enjoying the TV, her real prize has been supporting others living with Parkinson’s in honour of her grandfather.

“I hope that one day this disease will be non-existent. Seeing my grandfather having to deal with the challenges that a Parkinson’s diagnosis presents broke my heart every day and if I can help even in the slightest to make sure no one else has to face those challenges, I will do whatever I can.”

Another of our community heroes Hanif Balolia also had a grandfather living with Parkinson’s who, along with his mother and father, inspired him to get involved in Parkinson SuperWalk, both personally and as a business owner.

It was Balolia’s mother who was the hero. He remembers his mother flying to East Africa to visit and help care for his grandfather. “She would be there for long periods, sometimes months. I know she carried the family burden,” recalls Balolia. His father has also always encouraged him to give back to those who are less fortunate, with both time and money.

This year, Balolia’s firm AgeComfort.com will enter a corporate team in the Parkinson SuperWalk, and the company will donate prizes for the ‘Everyday Heroes’ contest, which launches online in June.

You can join Hanif and Amanda and become an everyday hero, inspiring hope for Canadians living with Parkinson’s as well as their families and care givers. Register today for a fun, family outing with a special purpose. Or contact your regional Parkinson Society office for local SuperWalk details.

End Of The Roll promotes Parkinson’s Awareness Month

Each month, End Of The Roll features a charity to spotlight. End Of The Roll has identified Parkinson Society Canada as their special cause during April, Parkinson’s Awareness Month. As a locally owned company in Canada, they truly care about the communities we both are a part of, and the families that make up those communities. End Of The Roll recognizes that when Parkinson’s disease affects one person, it affects the whole family and the community of people around that person.

End Of The Roll will be featuring Parkinson Society Canada throughout April on their website, blog and social media accounts to help raise awareness and funds to improve the lives of the tens of thousands of Canadians affected by Parkinson’s disease. Visit their blog to read more.


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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