Archive for November, 2013

Message from the Editor

Marina Joseph

Marina Joseph, Editor e-Parkinson Post

In this final issue of eParkinsonPost for 2013, we wrap up an exciting year, not only for Parkinson Society Canada but also for the global Parkinson’s community. We’ll focus on some of the great work by Canadians in communities, university labs and at global gatherings for Canadians living with Parkinson’s.

We shine the spotlight on over 14,000 people who make our programs and services possible. With more walks and virtual teams than before, Canadians stepped up and stepped out raising over $2.75 million in the 23rd Parkinson SuperWalk held in over 100 communities across Canada in September.

We’ll cover highlights from the 3rd World Parkinson Congress, the triennial meeting of Parkinson’s organizations from around the globe. More than 1,300 of 3,300 delegates in attendance were from Canada.  PSC was also proud to be part of  the Canadian contingency of scientists, health professionals working in neurological and related fields, people with Parkinson’s, policy makers and organizational leaders.

Our Congress coverage takes you beyond the scientific presentations, and the tour of poster abstracts to explore Congress as experienced by people with Parkinson’s. There was no greater example of this than the Buddies Program, a pilot project of WPC supported by PSC and volunteers, pairing people with Parkinson’s in Canada with global attendees.  And read our advocacy update which includes highlights from the inaugural World Parkinson Congress Policy Forum.

And finally, learn about the expansion of our continuing education program and resources for health professionals based on the first Canadian Guidelines on Parkinson’s Disease.

eParkinsonPost is a free subscription based online newsletter published up to five times each year by Parkinson Society Canada. We value your feedback and encourage you to post comments about the articles.  And if you really enjoy this resource, share it with someone you know so that they too can subscribe and be more informed about Canada’s Parkinson community.

Dr. Virginia Lee Presents Leading Edge Research at 2013 Donald Calne Lecture

Dr. Virginia M-Y Lee, 2013 Donald Calne Lecturer

Dr. Virginia M-Y Lee, 2013 Donald Calne Lecturer

Parkinson Society Canada seized the opportunity to host this year’s Donald Calne Lecture during the 3rd World Parkinson Congress, tripling attendance and welcoming an international audience.

Dr. Virginia Lee, Professor at the University of Pennsylvania School of Medicine, and the 2013 award recipient, spoke about “New insights into the mechanisms of Parkinson’s disease progression.” Her research on the etiology and pathogenesis of alpha-synuclein, tau, TDP-43, and other misfolded disease proteins in the pathobiology of neurodegenerative diseases like Parkinson’s and Alzheimer’s diseases has been heralded as groundbreaking by her peers. Dr. Lee’s recent work, specifically on alpha-synuclein, has generated some excitement among other researchers in related fields.

Dr. Lee was proud of the recognition.

“It was an honour to receive the Donald Calne Lectureship Award. I’m proud to be the first woman to receive it,” said Dr. Lee.

Presented by Parkinson Society Canada and co-sponsored by AbbVie Canada and Teva Canada Innovation, the event on October 3rd was attended by several hundred guests.

“We are very proud to support the Donald Calne Lectureship. Sharing information via world renowned researchers, such as Dr. Virginia M.-Y. Lee, is crucial for the scientific community, those living with Parkinson’s disease and their families,” says Felipe Pastrana, General Manager of AbbVie Canada.

“Most of the scientists that won (the Donald Calne Award) in previous years I know them quite well personally. That’s one of the more interesting aspects of the Donald Calne Lecture, seeing the dedication from Parkinson Society Canada,” added Dr. Lee.

A video of the Donald Calne Lecture will be made available on Parkinson.ca shortly. Visit our website for more information on previous Donald Calne Lectures, and read our Scientific update article in this issue of e-Parkinson Post for more on Dr. Virginia Lee’s research.

Parkinson SuperWalk Supporters Fund Critical Research and Hope for a Cure

02-Parkinson SuperWalkWith over 100 walks and virtual walks and more than 575 teams across Canada, people stepped up and stepped out raising more than $2.75 million.  That’s a giant step toward identifying the complexities of Parkinson’s disease.

“The Parkinson’s community in Canada proved once again what it can do when they all pull together across the country. Their collective efforts raised funds that will make a difference to people with Parkinson’s today and tomorrow,” said Joyce Gordon, Parkinson Society Canada, President and CEO.

Proceeds from Parkinson SuperWalk funds educational resources, support services and advocacy efforts provided by Parkinson Society Canada and its regional partners across Canada to people living with Parkinson’s coast to coast.

“Parkinson Society Canada was there for me and my mother so that we could be better care givers to my father, especially during his difficult days.  I’m glad we can pass this gift on to other families,” said Patricia Peterson, Edmonton, daughter of the late Dr. Frank Peterson.

Event proceeds are also invested in the National Research Program that enables Canadian Parkinson’s scientists to learn more about the causes of Parkinson’s, develop better treatments and seek a cure for this brain disease.

This year, Parkinson Society Canada and its regional partners support 22 new grants, fellowships and student awards. These new awards represent a total of $1,273,879 committed to support new research projects in Canada over the next two years. Including the 13 research awards in their second year, the National Research Program is currently investing $1,758,839.

This includes:

  • 10 Pilot Project Grants
  • 3 New Investigator Awards
  • 2 Basic Research Fellowships
  • 1 Clinical Movement Disorders Fellowship
  • 1 Clinical Research Fellowship
  • 4 Graduate Student Awards
  • 1 psychosocial Doctoral Award

Visit www.parkinsonsuperwalk.ca to see the roster of top fundraisers and top teams online. Kudos to more than 14,000 volunteers, walkers and sponsors for making a difference!

Advocacy Update

03-Policy Day Group Shot WPC 201319_croppedParkinson Society Canada was proud to welcome the world to Montreal in early October. The week began with the inaugural World Parkinson Congress Policy Forum. The gathering was focused and intimate, with approximately 50 delegates attending including government policy staff from Canada, France, Mexico and the United States. Also in attendance were leaders from international Parkinson societies, Parkinson ambassadors, and representatives from industry. The event was moderated by Jeffery Simpson, National Affairs Columnist for The Globe and Mail. These discussions helped elevate Parkinson’s and other neurodegenerative diseases as a worldwide health issue, by examining the social and economic impact of these conditions on a global scale.  A full report on the outcomes of the forum will be published shortly.

The Parkinson’s community also welcomed two public policy wins this fall. First, the issue of Genetic Fairness for Canadians took a big leap forward when it was featured in the Throne Speech as a new priority for the Government of Canada. Following on the heels of this victory, the government also finalized the Comprehensive Economic and Trade Agreement (CETA) which included reforms to intellectual property standards for medicines in Canada. Parkinson Society Canada believes these changes will provide an exciting opportunity to position this country as a world leader in advanced medical research. We believe these reforms will attract global investment in life science research in Canada, allow citizens to gain access to newer medicines, create a stronger healthcare system, and increase the quality of life of all Canadians.  For more information on these and other advocacy issues, please visit our advocacy centre of the national website.

Leading Scientific Research at the World Parkinson Congress

Dr. Matthew Farrer presents to attendees of WPC 2013 in Montreal.

Dr. Matthew Farrer presents to attendees of WPC 2013 in Montreal.

The 3rd World Parkinson Congress (WPC) in Montreal was a great place for scientists, health professionals and the public who share an interest in Parkinson’s to share ideas, learn about recent progress and showcase the latest research discoveries with colleagues from around the world. It would be impossible for one person to attend and cover all topics due to the full slate of parallel sessions, so we’ve keyed in on some of the most exciting topics and prominent presenters at WPC 2013. Suffice to say, there was something for everyone!

Leading the way and quite active in many panel discussions, plenary sessions and media briefings was Dr. Virginia Lee, Professor at the University of Pennsylvania School of Medicine. Dr. Lee’s research into alpha-synuclein and its role in Parkinson’s disease may lead to a more complete understanding of how PD populates the different regions of the brain over time.

“In the 80’s and 90’s scientists put fetal stem cells into the brains of Parkinson’s patients to replace compromised dopamine pathways. After the patients died, their brains were studied. New cells created from the fetal stem cells were found to accumulate alpha-synuclein  containing Lewy bodies,” said Dr. Lee.

Alpha-synuclein is a protein primarily found in neural tissue where it plays a role in nerve cell communication. Lewy bodies are abnormal aggregates of alpha-synuclein protein that develop inside nerve cells in Parkinson’s disease.

“We did experiments that involved putting abnormal alpha-synuclein aggregates  in normal mice. We could demonstrate that mice get the alpha-synuclein pathology and pass it on to other cells, including the cells that make dopamine. These mice developed Lewy bodies. With this experiment we  have generated  a great model of non-inheritable Parkinson’s disease that links alpha-synuclein pathology and the loss of cells that make dopamine. Moreover, we showed that progression of Parkinson’s disease could be due to cell to cell transmission of alpha-synuclein pathology” added Dr. Lee, who has attended all three WPC  events.

Dr. Lee believes this could eventually lead to Parkinson’s treatments and possibly even as an early diagnostic tool. She feels confident that eventually they will be able to block the pathology that passes misfolded alpha-synuclein from one cell to another by using antibodies or other transfer inhibitors, although no research has been done as yet leading in this direction.

“Alpha-synuclein is found in neurons in the central nervous system. It’s also found in the neurons of the gut and red blood cells. Doctors can measure alpha-synuclein levels in spinal fluid to see if they can see changes. I think any decrease  in alpha-synuclein is bad. It’s still early but we’re trying to standardize using alpha-synuclein as a biomarker,” Dr. Lee said enthusiastically.

Dr. Lee also feels that this positions Parkinson’s disease and related research front and centre in the neurological sciences community. She hopes it will lead to more testing and clinical trials by teams advancing what we know surrounding alpha-synuclein.

“This puts Parkinson’s disease ahead of other neurodegenerative diseases because of these findings.  Lewy bodies are abnormal structures that accumulate as trash in the brain of people with Parkinson’s. We want to model it in mice so we can do experiments for better understanding of how Lewy bodies spread over time and cause neurons to become dysfunctional and die. These insights will allow us to develop therapies to halt the spread and rescue neurons from dying,” summarized Dr. Lee.

Over time, Dr. Lee’s research will complement other studies and eventually give scientists a complete picture or map of how Parkinson’s works from start to finish. Another such researcher committed to solving the Parkinson’s puzzle is Heidi McBride through her study of mitochondria.

Mitochondria are known in scientific circles as “cellular power plants” because they generate most of any given cell’s supply of adenosine triphosphate (ATP) which is used as a source of chemical energy. Mitochondria are also involved in signaling, cellular differentiation, cell death, as well as the control of the cell cycle and cell growth. One of the biggest developments in Parkinson’s research is that the mitochondria become dysfunctional in the early stages of the disease.

A well-functioning engine

“Think of it as a combustion engine. Mitochondria use oxygen we breathe along with fuel (sugar and fat) but unfortunately you get ‘smoke’ with an engine malfunctioning from Parkinson’s disease. We have to figure out how mitochondria clean themselves and remove bad proteins and lipids,” said Dr. Heidi McBride, Canada Research Chair in Mitochondrial Cell Biology and researcher at the Neuro at McGill University in Montreal.

The next step for McBride, who recently moved to McGill to be closer to clinicians and people with Parkinson’s, is to translate the findings into clinical data with the help of her research team. To date, only McBride and Dr. Edward Fon, Director of the McGill Parkinson Program, have witnessed normal mitochondria ejecting ‘pods’ of damaged materials, a function that becomes hindered by Parkinson’s.

“We hope to find a way to accelerate the clearance of damaged mitochondria in cells so they can stay healthy. Even toxins bind and block mitochondrial respiration so you end up with additional damage from this as well. We have to find a way to get rid of this damage. We’re still working on how they (mitochondria) clean themselves and sort out the damaged bits,” added McBride.

McBride is optimistic that they are getting closer to providing answers which could lead to treatments for people with Parkinson’s.

“It’s not going to help symptoms at this point but if we could develop a drug that stops mitochondrial damage we could help those cells live longer,” McBride said.

Molecular therapeutics targeted to the right pathways in the right subjects

Dr. Matthew Farrer, Professor in the Department of Medical Genetics and Director of the Centre for Applied Neurogenetics in the Brain Research Centre at University of British Columbia and the 2012 Donald Calne Lectureship recipient, is working towards similar breakthroughs with his research on genetics, neuroscience, neurology and their integration with Parkinson’s disease.

“We’re working on finding new genes, mutations, pathways, mechanisms and new insights on how to fix the problem of Parkinson’s disease,” said Dr. Farrer.

Like his colleagues, Dr. Farrer is looking for ways to treat and even cure Parkinson’s at the molecular level.

“Our belief is that our work will lead to medications that slow or even halt disease progression, specifically with molecular therapeutics targeted to the right pathways in the right subjects,” Dr. Farrer added.

Together, Dr. Virginia Lee, Dr. Heidi McBride, Dr. Matt Farrer and other leaders in the neurosciences  are helping to build a complete map of the biology of Parkinson’s disease. This is a large map and a global effort.

“We’ve got to keep on doing what we do. By 2020 we hope to have mapped almost all of the genetic variability contributing to Parkinson’s. We’re making models from that and are now starting to get insights about the biology,” Dr. Farrer finished.

To stay up to date on the work of the three researchers featured in this article, read more online (original content in English only) at:

Dr. Virginia Lee ,   Dr. Heidi McBride ,   Dr. Matthew Farrer

To find out more about Parkinson Society Canada’s National Research Program, visit online at www.parkinson.ca.

A Walk Down Learning Lane: The WPC Poster Tour

The 3rd World Parkinson Congress (WPC) in Montreal was an event brimming with science-based seminars, presentations on the latest research and interactive workshops to help  people with Parkinson’s live better. The formal program was complemented by other educational avenues during the four-day event. The WPC Poster Tour, a collection of over 200 discovery level research and Parkinson’s treatment strategies for every day living presented in poster format, was a mainstay of the exhibit hall.

Attendees had the option to casually stroll down the aisles of posters, grouped together by the two main themes of discovery science and living with Parkinson’s, or sign up for a guided tour by a prominent Parkinson’s specialist or neurological scientist.

Dr. Matthew Farrer, Professor in the Department of Medical Genetics and Director of the Centre for Applied Neurogenetics in the Brain Research Centre at University of British Columbia and world-renown genetics expert, was one of the tour guides.

“My role (as WPC Poster Tour guide) was to engage the presenter to discuss how the study was conducted, to ask questions about their findings and offer suggestions on next steps or how to move the study forward,” said Dr. Farrer.

The science-based posters were created largely for others working in the fields of Parkinson’s and neurological science, including basic and clinical sciences, best practices for care delivery and related themes. People with Parkinson’s and other non-medical contributors also submitted posters delivering information that could make a positive difference in living with Parkinson’s, including exercise suggestions and raising awareness for fundraising campaigns all over the world.

“I see them as a visual overview of specific research. The posters give objectives and outcomes and those who want to know more can review the full scientific papers from the researcher or clinician,” said Grace Ferrari, Health Care Professional Education Associate at Parkinson Society Canada.

“Going on a tour with a professional gives you a deeper understanding of what posters mean and the information that they deliver,” added Ferrari.

Parkinson Society Canada presented a poster at WPC covering the newly launched buddies program, a pilot project and a first at Congress, delivering sign up statistics, countries involved and projected outcomes and gains for participants. Overall the Buddies Program, the WPC Poster Tour and our Buddies Poster were a great success.

For more information on the WPC Posters please visit the World Parkinson Congress website.

Nurturing Friendships at WPC One Buddy at a Time

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Kip Smith and Laurie Nobbs meet in person at WPC.

Everyone could use a travel companion, especially when you’re venturing out of your normal stomping grounds. For people with Parkinson’s traveling abroad to World Parkinson Congress (WPC) in Montreal, for example, managing Parkinson’s symptoms compounded by possible language barriers makes relationships and conversations that much more challenging.

Parkinson Society Canada (PSC) and the World Parkinson Coalition wanted to help conference attendees feel more comfortable while in Montreal. This led to a pilot project and the new Buddies program was born. The Buddies Program paired Canadians together with international participants based on personal information they provided to organizers, such as language, gender, and age of diagnosis.

Laurine Fillo, from Alberta, didn’t waste any time signing up after registering for WPC.

“It sounded like a great idea. Being from Alberta we were sure other Albertans we knew would be there. I thought signing up would be beneficial to my buddy,” said Laurine, partnered with Sharon Daborn, WPC Ambassador for Australia.

Although Laurine and Sharon didn’t interact as much as they would have liked, due in large part to Sharon’s duties as a WPC Ambassador, they both feel the experience was a valuable one.

“We went to the Buddies Reception together which was a really good experience. It was good to see the face and voice of someone you’ve been getting to know. From there on I was flat out (busy),” said Sharon.

Other buddy pairs had an easy time connecting prior to, and during, WPC. Laurie Nobbs, from British Columbia, Canada was paired with Kip Smith from the United States. The two started cultivating a relationship in January 2013 via email.

“We exchanged emails once every week or two. In January I got an email from (the program coordinator) with contact details for Laurie and that was it. We talked pretty often. We attended the buddies reception and a few sessions together. It was a lot of fun,” said Kip.

“We started communicating quite a while before congress; about eight months before. In that time we developed an easy going relationship. We had a lot in common and we shared a lot of info,” added Laurie.

“When we got to the buddies reception we saw that the event was beautifully organized. Some people met for the first time and exchanged pictures. Two fellas embraced each other when they finally met. These were complete strangers prior to the Congress. There was a really energetic feeling in the room. When we met Kip face to face we felt emotional, like meeting an old friend,” added Linda Thiessen, Laurie Nobbs’ wife and caregiver.

Prior to WPC, Kip and Laurie tried to meet face to face when the Smith family travelled through B.C. en route to Alaska. The timing didn’t end up working out but the Smiths will make another attempt to visit next summer when they repeat their trip up North.

“Next summer we’ll try again,” Kip reassured.

Bill Sloan, WPC volunteer and administrator for the Buddies Program, was instrumental in making the pilot program a success by matching 206 WPC attendees into 103 buddy pairs. He also spearheaded the Buddies Reception, held just prior to the opening ceremonies for WPC, to help buddies meet face to face, most for the first time.

Being a person with Young Onset Parkinson’s himself, Bill Sloan was an ideal choice to make matches that complimented each other well. With Bill’s diligence and hard work the Buddies program turned out to be a meaningful addition to the Congress format.

“It was a success, and we could make it even more successful. We learned things to make improvements for next time,” added Bill.

Other buddies also felt the program was worthwhile and the benefits will live beyond the Congress.

“It’s nice to have somebody to talk to who understands what you’re going through and maybe give you some info on how they deal with their own Parkinson’s. Kip has had Deep Brain Stimulation surgery and I’m interested in it for myself. He shared a lot of info with me,” added Laurie.

“I can take a break from it because I don’t have Parkinson’s but Laurie can’t. Having a buddy who understands what he’s going through helps him. It’s interesting to see that each person with Parkinson’s is unique while also having commonalities,” said Laurie’s wife Linda.

The relationships formed at WPC won’t stop simply because Congress is over. Some of the participating buddies plan to keep their conversations going by way of email, texting and online chats. The Buddies Program didn’t just bring people together for a few short days, it helped create lifelong friendships that will carry on for years to come.

“The best part for me was to actually feel comfortable coming into a new country. I’m not a great international traveler. I felt good knowing there was someone there that I could talk to,” said Sharon.

With this level of success and positive experiences, let’s hope the program lives on for old friends and new buddies at the 4th WPC in Portland, Oregon in 2016.

For more information on the Buddies Program click here to view the WPC poster presented in Montreal.


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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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