We all know that living with Parkinson’s isn’t easy. With the right information people with Parkinson’s can empower themselves to make informed treatment choices for their own care. That’s what the June issue of e-Parkinson Post is all about; empowerment for individuals in the Parkinson’s community.
In this issue we talk about the Canadian Clinical Guidelines on Parkinson’s disease, which educates and informs people with Parkinson’s, allowing them to make informed decisions together with their doctor and other health professionals about treatment options such as medications, exercise and even surgery.
We’ve also got some exciting news from the Canada’s Parkinson’s research community. Researchers at McGill University, led by Dr. Edward A. Fon and Dr. Kalle Gehring, have discovered the three-dimensional structure to the protein Parkin. This new knowledge could help scientists develop better treatments for Parkinson’s and even slow down the progression of the disease.
World Parkinson Congress is rapidly approaching and with less than four months until we gather in Montreal, we’re showcasing some of the seminars and workshops that will be running at WPC in October. Remember, registration is now open to the public and the early bird registration deadline ends July 2, 2013. If you want to attend please visit the WPC registration page online and sign up!
Enjoy these updates and send us your comments. We’d like to hear from you.
Leading researchers at McGill University, funded in part by Parkinson Society Canada (PSC)’s National Research Program, have made a breakthrough that could lead to new drugs which may slow the progression of Parkinson’s disease.
Dr. Edward A. Fon at the Montreal Neurological Institute and Hospital -The Neuro, and Dr. Kalle Gehring in the Department of Biochemistry at the Faculty of Medicine led collaborating teams to discover the three-dimensional structure of the protein Parkin, a component of a system that mediates the targeting of proteins for degradation in the brain.
This discovery resulted from several years of work by the collaborators, and was made possible in part through a PSC $45,000 Pilot Project Grant to Dr. Gehring in 2011 and as well as the Porridge for Parkinson’s (Toronto) Pilot Project Grant of $45,000 in 2012. Additional funding was provided by the Canadian Institutes for Health Research, and infrastructure support from the Fonds de recherche Québec and the Canada Foundation for Innovation.
“If we can reproduce this response from our research findings with a drug rather than mutations, we might be able to slow the progression of disease in Parkinson’s patients,” said Dr. Gehring.
Parkinson Society Canada announces Dr. Virginia M.-Y. Lee, Professor at the University of Pennsylvania School of Medicine is this year’s recipient of the Donald Calne Lectureship.
Dr. Lee is internationally recognized for her work on the etiology and pathogenesis of alpha-synuclein, tau, TDP-43, and other misfolded disease proteins in the pathobiology of neurodegenerative diseases, including Alzheimer’s disease (AD), Parkinson’s disease. Other research efforts focus on an increased understanding of the collaborative initiatives to advance drug discovery in Alzheimer’s and Parkinson’s diseases.
The Donald Calne Lecture, presented by Parkinson Society Canada and co-sponsored by AbbVie Canada, takes place during World Parkinson Congress, the evening of October 3, 2013 in Montreal. Learn more about Dr. Virginia Lee and the Donald Calne Lectureship on Parkinson Society Canada’s website.
“We are very proud to be supporting 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.
When you have Parkinson’s, navigating new relationships and social situations can be difficult. Between the debilitating and sometimes embarrassing symptoms, such as issues with speech and cognitive dysfunction, and the constant need for medications finding common ground with a new friend can be illusive. That’s why organizers of the World Parkinson Congress (WPC) 2013 launched the Buddies Program, an international social connection available to all registered participants of WPC.
The Buddies Program initiative aims to strengthen the Global Parkinson’s community by matching WPC registrants with Parkinson’s from abroad to Canadians with Parkinson’s disease who are attending Congress.
“People can become isolated. This can help them reach out to others with Parkinson’s. With the internet we can travel long distances in short times and communicate. Whether you have Young Onset or more advanced Parkinson’s you can meet up with a buddy you can relate to; someone of similar age and situation,” said Bill Sloan, WPC Buddy Program Administrator and a person with Parkinson’s.
About the Buddies Program
Once people with Parkinson’s sign up to attend WPC they will be prompted to engage in the optional Buddies Program. Attendees who opt into the program will be matched with other buddies from around the world. Even spouses are included in the program if they choose. Matched buddies are then free to communicate online leading up to WPC and hopefully beyond. Having a friendly face to greet participants in a new venue can reduce the anxiety and uncertainty of travelling away from home.
Program administrators think the Buddies Program, primarily for English speaking attendees, and the connection to someone with similar experiences will make the travelling and transition easier to handle.
“For those coming to Congress it will be wonderful to have a connection to look up when you get to Montreal. Being in a foreign place can be intimidating. Having somebody to meet makes it feel more like home,” said Marjie Zacks, Chair, WPC Global Communications Committee.
“Our attendees are curious. They want more knowledge about Parkinson’s. What better way to learn than directly from other people living with Parkinson’s,” added Louise LeBlanc, Coordinator of Volunteers for Parkinson Society Canada Central & Northern Ontario.
Organizers believe the long-distance relationships can provide a valuable service for those who get involved. And the benefits can extend beyond the four- day experience of the official event.
“It is difficult to be open about your Parkinson’s disease. It takes a lot of courage to share it with family and friends and the Buddies Program allows for a certain amount of discretion,” said Zacks.
“It may start with email. We’d love to see people use Skype or communicate online. It’s our hope that some long-term friendships come out of this. Some countries are more advanced with Parkinson’s research than others. Maintaining these relationships will keep communications and sharing of experiences going,” said LeBlanc.
The WPC brings together all stakeholders in the Parkinson’s community, including scientists, advocacy groups, and organizations like Parkinson Society Canada, and because the conference is set up by people who understand the Parkinson’s experience, the Buddies Program will enrich an already enlightening forum.
“The Buddy Program has given me the privilege and opportunity to meet a number of people living with Parkinson’s throughout the world. It gives me a sense of “belonging” hearing some of the stories of those inflicted with this Neurological Disorder. It is extremely rewarding matching up two or four individuals (couples) that I believe are a terrific fit,” said Sloan.
Sloan looks forward to meeting all his new “buddies” in Montreal and finding out about Parkinson’s experiences around the globe.
To date 52 matches have been made in the Buddies Program with 33 people ready to be paired.
Buddies Program Quick Facts
Here are some quick facts about WPC and the Buddies Program:
Participation is available to all registered World Parkinson Congress attendees but is not mandatory
Participants will complete a short online survey to capture relevant information such as age, gender, stage of Parkinson’s, year of diagnosis, language preferences and personal interest to ensure the most appropriate match
Spouses and care partners can participate. Some couples have already been matched with other couples
Buddies will have special benefits at the WPC in Montreal including a relaxation room
The third World Parkinson Congress takes place in Montreal, Canada for the first time ever from October 1 – 4. Presentations from scientists and researchers on Parkinson’s disease will touch on everything from recent lab discoveries to workshops on quality of life and comfort, with some being offered in French and English.
Parkinson Society Canada is honoured to take the baton from Parkinson’s UK, the previous WPC host, and welcome more than 100 World Parkinson Coalition organizations from around the world.
Day 1’s theme is ‘Why and how specific neurons die in Parkinson’s disease and what can be done about it?’ and kicks off with a plenary session in both languages with additional presentations occurring throughout the day. Researchers from four countries will be providing four lectures over the session. Attendees will learn:
About new mechanisms of neurodegeneration of Parkinson’s disease
To understand the multifaceted nature of the neurodegenerative process in Parkinson’s disease
To acquire knowledge as to how basic science may help in treatment for Parkinson’s disease
The theme for day 2 covers ‘Non-motor manifestations of Parkinson’s disease’. Various poster presentations will occur throughout the day such as the Tricks of the Trade Workshop where clever strategies to improve mobility will be shared. Attendees will learn to:
Explore clever strategies to overcome challenges to daily mobility (suggestions from professional and PWPs)
Demonstrate the integration of strategies to improve mobility into daily life (videos, live demonstrations)
The final day of WPC wraps up the conference with discussions on ‘New views on the management of Parkinson’s disease’. One of the theme-related presentations on day 3 will cover Neurobiology and treatment of dyskinesias as a Parallel Session. Researchers from four countries collaborated to pull together the session and hope that the talks will increase knowledge and understanding surrounding movement disorders.
WPC has multiple informative sessions and seminars daily for people with Parkinson’s disease, researchers and policy makers from around the globe. Visit the WPC website for a complete rundown of the World Parkinson Congress program and schedule.
Editor’s Note: We advise that you have the WPC program on hand for the registration process, and don’t forget to check out the Parkinson’s Buddies Program to enhance your WPC experience even further.