Days of hope and recognition during Parkinson Awareness Month

Joyce Gordon, CEO, Parkinson Canada
Joyce Gordon, CEO, Parkinson Canada

Joyce Gordon, Chief Executive Officer, Parkinson Canada

There is no doubt that Parkinson’s changes everything. One person living with the condition explained its impact this way: “Parkinson’s disease affects EVERY aspect of my life. From the moment I open my eyes in the morning to when I fall asleep at night, my mood, physical abilities and quality of life, depend on how well my medications, stress management and exercise are working to help diminish the effects of Parkinson’s.”

While everyone’s Parkinson’s journey is unique, help and hope in navigating that journey is available to you, from many sources. You do not have to deal with Parkinson’s alone. From friends and family to health care professionals and from donors and volunteers to resources at Parkinson Canada; information, support and advocacy are available. We know that it takes a community to support people living with Parkinson’s and their families. And while we are supporting you, we take comfort knowing there is a robust scientific community in Canada and around the globe who are collaborating in the search for a cure.

Throughout Parkinson Awareness Month, Parkinson Canada groups across the country are reaching out to their communities to promote public awareness and understanding of this complex condition. While some of these events have already taken place, take a moment to visit the interactive map on our website for local event listings. There may still be activities in your town that you can attend.

Many of these events and awareness campaigns are organized and implemented by community volunteers. Last week was National Volunteer Week and several of our community groups made the effort to recognize and thank these dedicated individuals. Other Parkinson Canada groups will formally recognize their volunteers once the intense activity of Parkinson Awareness Month is over. Our organization, and those we serve, are deeply grateful to each and every one of our volunteers and recognize that the help and hope we offer relies upon their continued contributions and commitment.

About 100 of our volunteers are Parkinson Ambassadors, helping us represent the Parkinson’s community in our efforts to influence provincial and federal government policy. We are pleased that our advocacy efforts so far have resulted in marked progress in federal legislation to end genetic discrimination — Bill S-201. We hope this Bill will be passed soon, so that Canadians will enjoy the same protection from genetic discrimination as citizens of all of the other G7 countries. Not only will genetic fairness legislation outlaw genetic-based discrimination by employers and insurers; its protections should also encourage greater participation in genetic research.

Representatives from our Parkinson Ambassadors were introduced to the members of the Ontario legislature at Queen’s Park on April 11, World Parkinson Day. They were recognized by MPP John Fraser, who also made a statement that day about Parkinson Awareness Month. And on April 18, Celina Caesar-Chavannes, MP, Parliamentary Secretary to the Prime Minister, made a statement in the House of Commons about Parkinson Awareness Month. In addition, Senator Ogilvie made a similar supportive announcement in the Senate. And in communities close to you, several local Parkinson Canada groups were successful in having their municipalities proclaim April as Parkinson Awareness Month. Awareness leads to understanding, and brings hope to people living with this life changing disease.

The messages delivered to legislators included the fact that right now in Canada some 100,000 individuals with Parkinson’s are struggling with the stigma and daily challenges of living with this complex neurological disease. By 2031, the Parkinson’s population will double. With more than 10 people diagnosed every day in Canada, chances are someone you know or love will be affected.

We at Parkinson Canada are working more cohesively than ever, to deliver the best possible support to people living with Parkinson’s. It is our number one core value: To put people with Parkinson’s first. Our heartfelt thanks go to everyone who helps us, especially during Parkinson Awareness Month, to create a better life with a brighter future for Canadians living with Parkinson’s today and a world without Parkinson’s tomorrow.

Your voice matters. I invite you to take the time to reach out and tell us how we have helped you, and how we can better serve your needs. Or simply send a message to communications@parkinson.ca and tell us how you’re celebrating living well with Parkinson’s.

Joyce Gordon, CEO, Parkinson Canada

Testing a new way to treat dyskinesia

Dr. Philippe Huot
Dr. Philippe Huot

One of the biggest challenges in treating Parkinson’s disease is finding ways to reduce dyskinesia, the involuntary movements most people eventually develop as a side effect of being treated with L-DOPA, the medication that reduces or controls their stiffness, tremors and rigidity.

Dr. Philippe Huot, a neurologist and neuroscientist, sees the effects of dyskinesia on the people with Parkinson’s he treats at the Centre Hospitalier de l’Université de Montréal’s Movement Disorders Clinic. He was recently awarded a one-year, $45,000, Lawrason Foundation pilot project grant by Parkinson Canada’s National Research Program to investigate a new treatment for dyskinesia.

“For some people it can be really debilitating,” he says. “They cannot write. They have trouble eating. They have trouble getting dressed. It can be really disturbing and undermine their quality of life.”

That’s why Huot is studying a new chemical compound he hopes will alleviate dyskinesia. He’s investigating a compound that modulates glutamate, one of the most abundant neurotransmitters, or naturally occurring chemicals, in the brain. Glutamate helps regulate movement and is also involved in generating these abnormal movements, Huot says.

Using an animal model of Parkinson’s disease, Huot is comparing the severity of dyskinesia in animals who receive the new compound in addition to L-DOPA. He is also testing the effect of simply receiving the new compound on its own, or against a placebo.

“What I hope I will demonstrate is that it is possible to alter the signalling of this chemical to achieve a reduction of dyskinesia, without altering the (beneficial) action of the current treatment,” he says.

The new compound has not yet been approved for use in humans, but similar chemicals have been tested in clinic – meaning that if it works, it might not take too long to secure funding to start small, proof-of-concept, clinical trials, Huot hopes.

“This is exciting, because maybe future clinical trials could be undertaken by me and my colleagues at my centre, and then we could move from molecules to bedside in a single centre. We can dream!”

Combining a research and a clinical career helps Huot understand not only what is happening at the cellular level in Parkinson’s disease, but how those events manifest themselves in the lives of his patients.

“I learn what the expectations, the fears and the hopes of the patients are,” he says. “This is a constant source of inspiration.”

Read about other researchers recently funded by Parkinson Canada’s National Research Program.

Communities across Canada are gearing up for Parkinson SuperWalk 2016

Brian Hawryluk
Brian Hawryluk

It takes a community to support a person living with Parkinson’s and search for a cure; from family and friends to healthcare professionals and from dedicated volunteers to researchers. Across the country more than 10,000 of these everyday heroes will once again don their super hero gear to participate in the 26th annual Parkinson SuperWalk, taking place from coast to coast on September 10 and 11.

Thousands more Canadians will sponsor walkers in support of Canadians living with Parkinson’s, raising funds for support services, education, advocacy and research. Two everyday heroes participating again this year will be Brian Hawryluk and his wife Michelle. Brian, a retired music teacher and still a performing keyboardist with the Blackboard Blues Band, was diagnosed with Parkinson’s six years ago when he was 54. Last summer he was invited to perform with David O’Hearn at a meeting of the Parkinson Canada support group in Mississauga. He became a regular member of the support group and last year participated in his first SuperWalk as part of the Mississauga Wilkinson Warriors SuperWalk team. The team placed first in Canada among the fundraising teams of 2015, raising more than $45,000.

“The team was incredible and they raised a phenomenal amount of money,” says Brian. “And the money raised helps to fund many support groups like ours, and research into better treatments and a cure for this disease.”

Last fall Brian attended a research event featuring presentations by some of the researchers funded by Parkinson Canada’s National Research Program and was able to see how his fundraising efforts are being used to invest in help and hope.

“While some of it was beyond me, they were inspirational as they explained how their work may lead to better treatments to improve the lives of people living with Parkinson’s and advance our knowledge towards a cure,” says Brian.

The first-hand contact with researchers meant Brian was very receptive when he was asked to participate in a clinical study being conducted at the movement disorders clinic where he receives treatment. He is now taking part in a three-year ONDRI (Ontario Neurodegenerative Disease Research Initiative) study.

You can join Brian and the rest of the Mississauga Wilkinson Warriors 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 Parkinson Canada at 1-800-565-3000 for details on a SuperWalk location near you.

Dr. Robert L. Nussbaum to present the 12th Donald Calne Lecture

Dr. Robert L. Nussbaum
Dr. Robert L. Nussbaum

Parkinson Canada is pleased to announce that the 12th Donald Calne Lecture will be presented by Dr. Robert L. Nussbaum on Tuesday, May 31, at 7 p.m. in conjunction with the Canadian Association for Neuroscience annual conference being held in Toronto. His presentation will be about genetics and Parkinson’s and will be suitable for both the public and the scientific community.

Dr. Nussbaum received his training in medicine in the Harvard-MIT Joint Program in Health Technology, his internal medicine training at Barnes Hospital/Washington University, and his genetics training at Baylor College of Medicine. He is board certified in internal medicine, clinical genetics and clinical molecular genetics.
Dr. Nussbaum directed the original research that led to the discovery of mutations in alpha-synuclein in hereditary Parkinson disease in the mid-1990s and has been studying its role in Parkinson disease ever since. Dr. Nussbaum is currently the Chief Medical Officer for Invitae, a genetic testing and information company, based in San Francisco, U.S.A.

Be sure to save the date. Advance registration will be required as space is limited. More details will be posted on www.parkinson.ca as they become available, including how to register. The presentation is co-sponsored by Abbvie Canada.

About the Donald Calne Lecture

Finding better ways to detect, diagnose, treat and ultimately, cure Parkinson’s requires cooperation from a global scientific community. The Donald Calne Lectureship, established in Canada in 2002, honours research that makes an impact on the world stage. Each year, the award celebrates a distinguished neuroscientist whose research is helping us learn more about how to understand, diagnose, and treat Parkinson’s. The recipient gives a speech, on the state of Parkinson’s research, to Canadian scientists, medical professionals, people with Parkinson’s and their families. To learn more about this event and past recipients, visit www.parkinson.ca.