Scott Ryan’s Parkinson’s stem cell research garnering international recognition

Dr. Scott Ryan

When Scott Ryan travelled to Sweden earlier this year, he was keen to share the Parkinson’s research results from his small lab team at the University of Guelph. He was even more thrilled to have his poster presentation be one of five winning posters, out of 1,700, at the International Society for Stem Cell Research conference.

A native of St. John’s Newfoundland, neuroscientist and assistant professor Ryan, 35, last year received a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award through Parkinson Society Canada’s National Research Program. Now at the halfway point, his project is gaining international interest.

In the quest to discover what’s killing the dopamine-producing cells whose death results in Parkinson’s disease, Ryan is honing in on a group of proteins that turn signaling networks in the brain on and off. He is concentrating on the balance between cell generation and degeneration, and on finding ways to reverse the latter. Ryan uses a model of Parkinson’s disease derived from the skin of a patient with a familial form of Parkinson’s. Once in culture, the donor cells were reprogrammed into stem cells and researchers were able to correct the genetic mutation that caused the disease, in this case a mutation in the alpha-synuclein gene.

Ryan is using this model and system to identify a family of proteins, called transcription factors, in dopamine-producing cells. He describes these proteins – including one called MEF2 – as a “pro-survival team” that can keep the dopamine-producing cells alive.

If disease mutations or environmental contaminants like pesticides or herbicides evoke stress in the energy-producing portions of the cells called mitochondria, the stress can turn off the survival team’s signaling network and block their ability to keep dopamine producing cells alive.

“The more stress that builds up, the more you deactivate (the proteins) until you reach a critical level, and the cell dies,” Ryan explains.

By working with a drug discovery and development group, Ryan hopes to test different compounds on the stem cell model of Parkinson’s disease, to find one that will turn the pro-survival signaling network he has discovered back on. He hopes his discoveries will apply to both familial forms of Parkinson’s disease – something that runs in his own family – and non-familial, or sporadic, forms.

“It really doesn’t matter why you have Parkinson’s, because what’s defective seems to be common in all forms, at a cellular level,” Ryan says.

Because Ryan’s work involves a model made from Parkinson’s disease patient cells, he hopes his discoveries will be easier to move to the clinic to help treat patients, compared with animal models of drug discovery.

“Translating it to humans will be less of an issue,” he predicts.

Ryan’s research career has progressed steadily, with every step contributing to the work he is doing today. And PSC’s National Research Program has played an important supporting role in his development. His fourth-year research project on how fatty acids affect signaling in cell and gene expression sparked his interest in continuing in the research field. Subsequent supervisors and mentors in Ottawa and California helped hone his skills.

“My Ph.D. supervisor Steffany Bennett at the University of Ottawa was instrumental in training me in how to approach research problems and how to think about science,” he says. “That’s also when I began studying neuroscience and I was drawn to Parkinson’s disease.”

The interest in Parkinson’s disease reaches back to his family roots in St. John’s. His grandfather and his great uncle both had Parkinson’s. “Until I was 10, I spent time after school at my grandparents’ house, just up the street,” he says.

After completing his Ph.D. Ryan was well-prepared to work with his next mentor Dr. Rashmi Kothary at OHRI (Ottawa Hospital Research Institute), who was studying several movement disorders. “He was associate director of the Institute and I was given the freedom to explore my own ideas and follow through,” says Ryan. He investigated the molecular underpinnings of a type of dystonia.

Funding from PSC’s National Research Program enabled Ryan to complete an international stint at the renowned Sanford Burnham Medical Research Institute (now called the Sanford Burnham Prebys Medical Discovery Institute) with neurologist and scientist Dr. Stuart Lipton.

“Dr. Lipton developed one of the only drugs currently in use for advanced Alzheimer’s disease,” says Ryan. “And his lab was run very much like an industry lab, conducting research and translating the results for therapeutic use. They were doing patient-derived stem cell research and I was able to apply this to my own work.”

Ryan began working on Parkinson’s disease in California with a large team of about 40 people. “In addition to the research, I learned to work with industry stakeholders, an increasingly important skill for researchers,” he says. A publication in the respected journal Cell was a significant accomplishment from this time.

Now at the University of Guelph, Ryan has his own lab, including a lab manager and post-doctoral, graduate and undergraduate researchers. The Pedaling for Parkinson’s New Investigator Award from Parkinson Society Canada’s National Research Program has helped make this a reality. In addition, he’s been able to parlay his earlier successes with PSC funding into another large, and unique funding partnership through the University of Guelph. The Ontario Ministry of Agriculture, Food and Rural Affairs, and the Grain Farmers of Ontario have granted him $300,000 over three years to explore whether dietary Omega 3 and 6 fatty acids reduce the risk of Parkinson’s disease.

“Research in Parkinson’s is definitely accelerating, driven in large part, by stem cell research and international collaboration, Ryan says. “This disease is an excellent candidate for a stem cell application. We know the location in the brain that is affected; we know that neurons are dying. And there is a large enough patient population that there is public interest, political will, interested funders and the potential to make a substantial impact on human health. It cannot be long now, before we find both lifestyle treatments and new drug treatments to prevent Parkinson’s and eventually alleviate its symptoms.”

To find out more about current and past projects funded through Parkinson Society Canada’s National Research Program, click here.


The time is ripe to press the Parkinson’s Community’s political agenda


On October 19 Canadians across the country will head to the polls to cast their votes and then await the news of who will form their next federal government. And since last March, Parkinson Society Canada’s more than 150 Ambassadors have been preparing for and visiting MPs and candidates to discuss the issues and promote the policies that will make a difference to the lives of Canadians living with Parkinson’s.

“Election campaigns and the first 100 days that a new government is in place, are critical times for informing and influencing elected officials,” says Vanessa Foran, Vice President of Public Affairs and National Programs for Parkinson Society Canada. “It’s when they are the most opento the opinions and priorities of voters in their ridings.”

Our Parkinson’s Ambassadors are promoting the following national priorities:

  1. Comprehensive genetic fairness legislation and policies that protect Canadians against genetic discrimination from both employers and insurance companies.
  2. A national seniors’ strategy, like the one being proposed by the Canadian Medical Association and its alliance partners, including PSC. The strategy should address the social, economic and health care needs of our older citizens in a consistent and coordinated fashion, across the country.
  3. The need to build on the findings of the National Population Health Study of Neurological Conditions, published last year, and increase investment in neuroscience research.

We are incredibly proud of all that our Ambassadors have achieved to date, and there are still many communities that need our representation. We could use your help to explain to candidates and MPs the needs of the Parkinson’s Community during this election campaign and in the critical first few months of the new government. We will provide you with the training and support you need to ensure that you are fully prepared to have an impact, in a way that’s meaningful to you.

“Regardless of the outcome of the election, one third of MPs will be new to the job and new MPs are often the most open to making a difference for their constituents,” says Foran.

You can help move Parkinson’s issues forward during the 2015 election campaign and beyond by becoming a Parkinson’s Ambassador in your riding. Whether you are a person living with Parkinson’s, a caregiver to someone living with the disease, or simply want to help with the cause, you can be a champion in your community by being the voice for Canadians with Parkinson’s.

For more information, please contact us at You can also find out more about our Parkinson’s Ambassador program by visiting our website at


Outstanding volunteers show true prairie spirit

Randy Dittmar
Randy Dittmar

It was love that brought Randy Dittmar to Saskatoon from Oshawa, and it is his humanity, dedication and creativity that kept him helping others after the loss of his wife from breast cancer 15 years ago and his diagnosis of young-onset Parkinson’s disease a year later at 49 years of age.

Two years later he found himself at a Parkinson Society support group meeting and it was daunting. “I was very discouraged at first, seeing others whose disease was further along. I know now that others often feel the same way when they first go to a group,” he says.

Volunteering with Parkinson Society Saskatchewan has been deeply satisfying for Randy and even fun. After several years attending a support group, the former leader Frank Funk asked Randy to take his place as the group’s Chair. “I had never been a leader before, but I enjoyed helping people and sharing information with them,” he says. Since then, Randy has exemplified enthusiastic and inspiring leadership for close to a decade.

And he has accomplished so much. In addition to being a support group Chair in Saskatoon, he has served for six years as a Board member, produced a 20-minute cable TV video about Parkinson’s disease and exercise and a shorter version for the 3rd World Parkinson Congress video competition, placing in the top 35 of 118 submissions. His support group started a “Let’s Get Out” program, where the members book a room at a restaurant and “we all eat and shake together,” he jokes. He also introduced the “Stomp Line Dance” to the support group meetings, to help everyone stay alert.

Most recently, he is very proud of a  Parkinson’s support program only for caregivers. “Even I’m not able to attend,” he says. “I was getting requests from caregivers for such a program and there wasn’t one anywhere else in Saskatoon specifically for those dealing with Parkinson’s, so we created it.” Now in its second-year, he’s been thanked many times by grateful caregiver participants. Randy has also produced a short video called “What!! No Caregiver” for the next video competition for the 4th World Parkinson Congress being held in Portland, Oregon in 2016.

In the fundraising arena, Randy is an ardent campaigner. He has organized the community’s participation in the Saskatoon Exhibition Parade for four years and in 2011, he was the Honourary Chair of Parkinson SuperWalk. He was part of the marketing efforts for Saskatoon’s 2009 SuperWalk of the year, winning the honour in a year with 87 participating communities.

“That 2009 win was wonderful and lives on today,” he says. The SuperWalk committee of 2009 recently had a reunion celebration as part of the Parkinson SuperWalk 25th anniversary. Randy’s SuperWalk efforts have also had some funny moments.

When Randy was still working at Saskatoon City Hospital, 10 of his work colleagues surprised him at SuperWalk. They turned up to show their support, dressed as Randy did at work: in a lab coat, blue operating room cap, glasses, and his signature big, black handlebar moustache!

It was tough for them to decide how to outdo this effort the following year. In “The Great Moustache Shaveoff,” they raised $4,100 for Randy to shave off the moustache he’d had for 33 years. “I decided it would be worth it if this money could possibly fund the cure for this terrible disease,” Randy said.

Like Randy, Marc Pittet’s volunteer work is very personal and it began by helping out Parkinson Society Manitoba with fundraising. “Wayne Buchanan told me about the Society’s golf tournament and called me up to ask for my help. He knew my father Henri had Parkinson’s and that I was a supporter.” Three years later, Marc was leading the golf tournament committee and the team achieved incredible results, raising a total of $400,000 over several years. His personal fundraising efforts for Parkinson SuperWalk have also been outstanding, totaling more than $50,000 in 10 years.

Marc has now served on the Regional Advisory Board of Parkinson Society Manitoba for 12 years, the last 10 years as its volunteer Chair. He feels a great sense of accomplishment in the current financial health of the organization, which positions them to make a great difference for people living with Parkinson’s. “When I started with the Board, we were financially dependent on the national organization, now we are able to contribute to the national research, advocacy and education efforts.”

As Chair, Marc also works with other regional leaders from Parkinson Society partners across the country. “We work hard to provide consistent services and information to all Canadians,” he says. “We want everyone to know about Parkinson’s and to get the care and support they need if it strikes their family.”

Marc is proud of the reputation that Manitoba holds of being the most generous province in terms of charitable giving. “We truly support one another.” Maybe it’s the prairie tradition of helping out your neighbours, especially in tough times.

Both Randy and Marc are volunteers whose leadership exemplifies this caring spirit that is having a tremendous positive impact on the lives of thousands of Canadians every day.  We are grateful for their service and commitment.


New resources offer advice from those in the know


Learning you’ve got a chronic neurodegenerative disease like Parkinson’s can be a shocking and very emotional experience, especially when you are not yet 30 years old. Even at 40 or 50, it can wreak havoc on your future plans – physically, mentally, financially, socially and emotionally. That’s why Parkinson Society Canada has funded two educational resources – one for individuals and one for physicians – to help address the unique needs of people who are newly diagnosed with young-onset Parkinson’s disease (YOPD). The new resources were developed by Michael Ravenek, PhD, with funding from PSC’s National Research Program.

Although the average age to be diagnosed with Parkinson’s is around 60, young-onset Parkinson’s (before age 40) occurs in five to 10 per cent of people diagnosed. Twenty per cent of those newly diagnosed are under the age of 50. While some challenges living with Parkinson’s disease are universal, regardless of age, there are a number of additional issues specific to younger people.

The first reaction is often the shock of a diagnosis of YOPD, even though individuals may have been experiencing symptoms to varying degrees. “I think when you get the diagnosis, your life sort of stops,” recalls one of the contributors to the booklet with advice for other patients. “You have to deal with your kids, you have to deal with your job, you have to deal with getting up every day and all the things you’re supposed to do and then deal with this at the same time. And there’s no instruction book on how to do that.”

These latest resources help to fill that gap. Written by Michael Ravenek, PhD, an assistant professor at Western University, the two booklets, Young-onset Parkinson’s disease: Advice for those newly diagnosed from individuals currently living with YOPD (2nd ed.) and Young-onset Parkinson’s disease: Advice for physicians from individuals living with YOPD (2nd ed.) provide advice on topics such as when to reveal your condition to your employer, planning finances for possible disability or early retirement, sharing your diagnosis with young children, teenagers and parents, and sexuality, among several others issues.

With funding from Parkinson Society Canada and the Canadian Institutes of Health Research, Ravenek interviewed 39 people living with YOPD for varying lengths of time drawing on their unique, personal experiences to write the initial editions of the two booklets. Feedback was later gathered from across the country from others with YOPD and their families, as well as health professionals, and incorporated into the second editions.

“There is a big gap in information available to those who face everyday life challenges combined with the unexpected and unique aspects of living with YOPD,” says Grace Ferrari, National Manager, Professional & Public Education, Parkinson Society Canada. “We are very pleased to provide these additional resources in both digital and printed formats, in English and French, to support people with Parkinson’s, their families and their physicians.”

The physician booklet highlights specific areas of the physician-patient interaction that all physicians should consider in their encounters with individuals with YOPD. Both booklets contain a sample “log” for daily medication, meals and exercise, along with a place to record “Questions for my next doctor’s appointment,” to help make the most of self-care efforts and doctor/patient interactions, respectively.

To find out more about living with Parkinson’s disease and the programs and services available near you, call 1-800-565-3000, or visit Use the interactive map to find support groups, access to local programs and support groups for those newly diagnosed, people with YOPD, exercise and more. Other Parkinson’s news and resources are regularly featured on our Twitter page, @ParkinsonCanada and Parkinson Society Canada on Facebook.


Transplantation for Parkinson’s disease – Don’t count it out yet!

Dr. Harold Robertson
Dr. Harold Robertson

By Dr. Harold Robertson

Transplantation for treatment of Parkinson’s disease has not been as widely discussed as it once was, but don’t count it out yet! During the past decade there has been increasing evidence that early diagnosis and treatment of Parkinson’s disease will be important in the future. One area where early diagnosis will certainly make a difference is neural transplantation.

A recent issue of Nature (March 5, 2015) drew attention to an article from Ole Isacson’s lab at Harvard. The article appeared in the high-impact Journal Cell Stem Cell and is entitled “Successful Function of Autologous iPSC (induced pluripotential stem cell)-Derived Dopamine Neurons following Transplantation in a Non-Human Primate Model of Parkinson’s Disease”(1). This represents a significant step towards a potential treatment or even a cure for Parkinson’s disease (PD). In the Maritimes, we have heard very little about transplantation of dopamine neurons since the departure of Dr. Ivar Mendez, so it is worth reviewing the current situation.

Neural transplantation for PD was started in the mid-1980’s, flourished from 1990 to 2002 and collapsed in 2002-2003 following reports from two National Institutes of Health (NIH) double-blind, randomized, placebo-controlled trials that showed little benefit and reported emergence of significant graft-induced abnormal movements (dyskinesias) in as many as 50 per cent of patients. It is interesting to note that during the years 2003-2009, centres that were not part of the NIH studies found that transplants provided significant improvements in PD symptoms with few dyskinesias. This led to a call to continue neural transplantation (2) and to the €12 million Transeuro project currently underway in the UK and Sweden ( It turned out that the two NIH studies were seriously flawed, but by the time that was realized, Parkinson’s disease research had moved on to glial derived neurotrophic factor or GDNF (which also failed, but that is another story) and other treatments.

But back to the Hallett paper (1). One of the dreams we had in the early days of neural transplantation work was the idea of either stimulating dopamine neuron production in patients or developing ways of taking the patients own cells, changing them into dopamine neurons and implanting the cells back into the patient. Since it is the patients’ own cells, immunosuppression would not be necessary. The advent of iPSC technologies also meant that we would no longer be handicapped because of the supply of tissue. The Cell Stem Cell paper by Hallett et al (1) studied monkeys that had been treated with MPTP to produce PD. They then took skin fibroblasts from individual monkeys and treated them with the factors necessary to convert cells to dopamine neurons. The cells were then transplanted back into the monkeys from which they were derived. The cells survived without immune suppression, re-innervated the putamen and improved motor function.

What does this all mean? Currently there are only symptomatic treatments for Parkinson’s disease so there is a huge unmet medical need for a treatment to halt progression. iPSC-based treatments are a matter of a few years away; I predict that clinical trials will begin in late 2015-early 2016. When and where will these trials be held? That remains to be seen. The Dalhousie – CDHA neural transplantation project that ran from 1985 to 2013 had an enormous lead over the rest of Canada and the results were among the best in the world (see figure 1 in ref 2). Most of that effort has now transferred to Saskatchewan.

(1) Hallett, P.J., Deleidi, M., Astradsson, A., Smith, G.A., Cooper, O., Osborn, T.M., Sundberg, M., Moore, M.A., Perez-Torres, E., Brownell, A.L., et al. (2015). Successful Function of Autologous iPSC-Derived Dopamine Neurons following Transplantation in a Non-Human Primate Model of Parkinson’s Disease. Cell Stem Cell.

(2) Barker, R.A., Barrett, J., Mason, S.L., and Bjorklund, A. (2013). Fetal dopaminergic transplantation trials and the future of neural grafting in Parkinson’s disease. The Lancet Neurology 12, 84-91.

This blog post (March 9, 2015), was written for the website of the Predict Parkinson’s Project by Dr. Harold Robertson and is reproduced with his permission. Dr. Robertson is currently a professor in the department of pharmacology at Dalhousie University’s medical school and is a past member of Parkinson Society Canada’s National Research Program Scientific Advisory Board.

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Everyday hero Steve Van Vlaenderen hits the airwaves for Parkinson SuperWalk

Steve Van Vlaenderen
Steve Van Vlaenderen

Parkinson SuperWalk 2015 is weeks away, and Steve Van Vlaenderen, 66, of Winnipeg, has already raised well over $1,000 for the Parkinson cause. He is confident he’ll reach his $2,500 goal before taking part in his first Parkinson SuperWalk on September 12. “I still remember hearing what was said when I was diagnosed in 2011: ‘There is no cure for Parkinson’s,’” says Van Vlaenderen. “We need to fund vital research to find better treatments, and ultimately end this complex disease. We cannot wait for a cure.”

In a radio ad promoting Parkinson SuperWalk across Canada, Van Vlaenderen urges all Canadians to participate, or to support one of the 14,000 other participants in more than 100 communities across the country on September 12 and 13. Every day, 10 Canadians are diagnosed with Parkinson’s and by 2031, the Parkinson’s population in Canada is expected to double.

While Van Vlaenderen started his fundraising in May, there is still plenty of time left to register for Parkinson SuperWalk and ask your family and friends to join you in the event, or to support your efforts. It’s a fun family outing, usually held in a local park setting, and doesn’t require any superpowers. And if joining on the day doesn’t fit your schedule, you can still support the cause and register online and fundraise as a virtual walker.

Van Vlaenderen is beyond prepared for most physical challenges, despite living with Parkinson’s every day. He has just returned from a three-week sailing adventure on Lake Winnipeg. And earlier this spring, he placed second in his class in the Manitoba Amateur Body Building Association Championship. He regularly trains at the gym five days a week for two hours a day and eats a healthy diet. This wasn’t always the case.

When first learning of his diagnosis, Van Vlaenderen became very depressed and suffered from anxiety. “I went to the hospital twice with panic attacks thinking I was having a heart attack,” he says. He gained a lot of weight and felt overwhelmed.

“On September 28, 2013, I remember the date, I decided to face Parkinson’s head on and take charge of my life,” says Van Vlaenderen. “I set goals. I started going to the gym. I decided to learn everything I could about my own body and Parkinson’s. It’s a different experience for everyone, so you need to learn to sync your mind and body and stay positive. Today, I consider Parkinson’s an annoyance, rather than a handicap.”

Van Vlaenderen believes goal-setting is very important to taking control of Parkinson’s and staying positive. After Parkinson SuperWalk, he’ll start training for the Manitoba Body Building Association Championships next spring and then on to the Nationals. While he admits his goals may be extreme for most people living with Parkinson’s, he says goals give structure to your day. “Just beginning with a walk around the block one day and then gradually doing more as you set new goals can make a big difference, both physically and mentally,” he says.

By sharing his story and promoting Parkinson SuperWalk, he hopes to inspire others dealing with this devastating disease. Van Vlaenderen was overwhelmed when he received three standing ovations from the huge crowd on hand at the body building competition in the spring. He imagines he’ll feel just as good completing the Parkinson SuperWalk in September by raising awareness and funds for research and community support for those living with the disease.

You can join Steve Van Vlaenderen, and so many other everyday heroes, by registering today for Parkinson SuperWalk 2015. Because a cure can’t wait.


Dr. Ronald Postuma appointed Chair of Scientific Advisory Board

Dr. Ronald Postuma
Dr. Ronald Postuma

Parkinson Society Canada is pleased to announce the appointment of Dr. Ronald Postuma as the Chair of its National Research Program Scientific Advisory Board (SAB). Dr. Postuma is a neurologist and assistant professor at McGill University, and author of two booklets on the non-motor symptoms of Parkinson’s disease, one for physicians and one for people with Parkinson’s. As Chair of the SAB, Dr. Postuma will also serve on the Research Policy Committee to ensure continuity between the two volunteer committees.

Dr. Postuma has served as a member of the SAB since May 2012. The SAB is a volunteer panel of respected experts from the Parkinson’s scientific community across Canada and conducts a rigorous peer review process using the Canadian Institutes of Health Research standards to determine scientific excellence and relevance to Parkinson’s disease. This ensures that Parkinson Society Canada funds research that is novel, important and scientifically sound.

To find out more about Parkinson Society Canada’s National Research Program and how the funding process works, download this brochure.


Message from Joyce Gordon, CEO

What is undeniable about life with Parkinson’s is that change and transition are the norm. And what we have learned is that those who are flexible and adaptable have the best outcomes in managing their disease. That life lesson is relevant to Parkinson Society Canada as we evolve and transform our organization to best serve the Parkinson’s community in Canada.

There is strength in unity. Through partnerships and alliances, we have become stronger in our ability to deliver on our mission as the national voice for Canadians with Parkinson’s. Throughout 2015, we have made positive strides through these trusted relationships with researchers in the scientific community, health care professionals, our pan-Canadian network of regional Parkinson Societies, and coalitions with champions who advocate for change. Recently, we updated you on Bill C-68, a good first step in bringing forward meaningful legislation on genetic fairness, though there was no commitment made by the government regarding regulating the insurance companies to ensure that disclosed genetic information cannot be misused to make unfair decisions regarding premiums and overall eligibility. We will continue to call on government to take appropriate steps to amend this.

Over the past five decades, we have been steadfast in our focus to hold people with Parkinson’s at the heart of all we do. We are grateful to our donors, supporters, volunteers and employees who enable us to bring hope by delivering world-class education, research, advocacy and supportive services and programs to individuals and families in communities coast to coast.

There are many ways to get involved in Canada’s Parkinson’s community whether you share your voice as a Parkinson Ambassador for the upcoming federal election, volunteer and fundraise for events like Parkinson SuperWalk or take an hour of your day to listen to a webinar on the latest developments in treatment in Parkinson’s. We recently invited you to participate in a survey for caregivers and we are sharing some news on the results in this issue. We also presented to nurses about the Canadian Guidelines on Parkinson’s Disease at the Canadian Association of Neuroscience Nurses at their annual conference and how this resource can help improve care for their Parkinson’s patients.

As Parkinson Society Canada celebrates the 50 year milestone in 2015, we will lead the way to strengthen community connections to best serve you while the quest for a cure continues.


Collaborating for caregiver support

Grace Ferrari and John Parkhurst
Grace Ferrari and John Parkhurst

Parkinson Society Canada (PSC), Alzheimer Society Canada and the Multiple Sclerosis Society of Canada are working together to develop a series of webinars specifically for caregivers supporting people living with any of the three neurological conditions. And who better to advise them of what would be most helpful to these caregivers, than the caregivers themselves.

“We recognize that the caregivers in our three communities have a lot in common,” says Grace Ferrari, Manager, Professional and Public Education at PSC. “And working in a partnership means we can make the most of our resources and our shared knowledge. Together, we can accomplish so much more than any of us can do on our own. We began this process by asking caregivers what information they needed and valued the most.”

Step one was a caregiver survey

An online caregiver survey, conducted between mid-March and the end of April, was developed and promoted by the three organizations to determine what information and topics were important and interesting to caregivers. We asked about priorities, navigating the health care system and other caregiver challenges and about 380 people completed the survey. Respondents were evenly distributed from among the three charities.

More than 55 per cent of responding caregivers are between the ages of 35 and 64, an age when many people are juggling the demands of multiple responsibilities, including working while caring for young children, and managing many other family demands.  Respondents confirmed that loss of income can put a financial strain on their household. Caregivers are often forced to choose between being there for their loved one’s care or being the source of income for the family. These are some of the people for which Parkinson Society Canada has been advocating for extended compassionate care benefits.   We also advocate with other partners, such as the Canadian Medical Association, for broader senior health care access and support within a National Seniors Strategy. And the survey confirmed that a large number of seniors are caring for seniors, reporting that sometimes they are feeling like they have given up their own retirement plans and dreams.  Almost 40 per cent of the survey caregivers, or two out of five responders, were 65 or older and more than 70 per cent were caring for a spouse or partner. Three of every four caregivers surveyed are women.

The survey respondents were receptive to a webinar with more than 83 per cent indicating they would participate in a webinar offering caregiver resources and information. What topics did they think the webinar should address? The top four topics, in order, were:

  1. Mental health and stress;
  2. Finding support in the health and social services system;
  3. Future care planning, and
  4. Financial support and planning.

The respondents’ comments also offered a rich commentary on their lives and challenges as caregivers.  “The caregiver role changes as neurological diseases progress. There is a delicate balance to care for someone and at the same time to help them maintain their independence,” says Ferrari. “As the caregiver, you have to keep adapting to the needs of your loved one, which usually steadily increase with the advancing stages of the disease.”

Step two: A “Think Tank” to distill and solidify the survey results

Nine people, two caregivers and one staff member from each organization, were guided by a facilitator for three hours, to further consider the survey results and identify the key topics for the caregiver education webinars, as well as offer other ideas for future partnership caregiver projects.  A complementary “Think Tank” was held in French in Montreal.

“It was a very open and participatory session,” says John Parkhurst, care partner for his wife Margot Bartlett for 25 years, and Parkinson Society Canada representative at the meeting. “The struggles of caregivers are a huge problem that is often in the background and this needs to be addressed. Many have lost any sense of their own life and there can be so many unknowns. It can be very isolating. Having some options, some supports, even if you never access them, is important.”

Ferrari found some of the Think Tank sharing very moving. “The demands and uncertainty of caring for a person with neurological conditions puts caregivers under extreme stress,” she says. “Time, finances, navigating the system, other family and work demands and the need for respite were all openly discussed, and now we have a really well-defined set of priority topics for developing information sessions to meet caregiver needs.”


What’s next?

With the input from caregivers, the three health charity organizations will now develop three national webinars (two in English and one in French) to be delivered in the fall and winter of 2015-2016. These first few webinars will focus on caregiver mental health and navigating the health and social services systems. Webinars are a cost-effective way of delivering education nationally, without time or location restrictions. They do require a computer and internet connection to participate. Participants can listen to the speakers as well as view videos, slides or other content on a screen. The audience can ask questions in real-time through an instant messaging tool that is part of the webinar technology. The webinars will also be available as a recording for those who wish to access the session at a later date or time.

Other suggestions from the caregivers think tank included establishing an ongoing pan-Canadian caregiver advisory group and a newsletter specifically for caregivers. These, and other suggestions, will be considered by the participating partners.

Other caregiver resources

Parkinson Society Canada has a number of resources for caregivers on its website. The Caregiver Network website also houses webinars that are specific to caregivers and/or specific diseases.

Celebrate the efforts of a caregiver you know

Parkinson Society Canada is proud to partner with Canada Cares to recognize family and professional care givers. You may want to check out the Canada Cares website and nominate your favourite caregiver for a Canada Cares 2015 Award. Nominations must be received by September 18 and all the details can be found at


Dr. Suneil Kalia: The long quest for a Parkinson’s cure

Dr Suneil Kalia
Dr Suneil Kalia

It was an article about the late Wilder Penfield, a neurosurgery pioneer, that sparked a young Suneil Kalia’s quest to become a neurosurgeon three decades ago. “I was fascinated by the fact that the patient was awake while the doctor was operating on the brain,” says Dr. Kalia.

It would take 20 years of post-secondary education and training to reach his goals of becoming a neurosurgeon, a molecular biologist and now also a neuroscientist conducting his own research into the mysteries of Parkinson’s disease. After earning a BSc from McGill, he then graduated from the MD/PhD program at the University of Toronto (U of T). His neurosurgical residency training included a one-year, post-doctoral fellowship at Harvard University in the Mass General Institute for Neurodegenerative Disease (MIND). Today, Suneil Kalia is an assistant professor at U of T, a neuroscientist at Toronto Western Research Institute (TWRI) and a neurosurgeon at Toronto Western Hospital. He is also the recipient of a pilot project grant from Parkinson Society Canada’s National Research Program.

Dr. Kalia inspired hope among the audience who attended the special presentation on June 14th entitled: Parkinson’s disease – moving towards a cure. He gave context to the research and clinical work that has been done in the past, is currently underway and possible future innovations. Probably one of his most telling slides was a visual “map” indicating investigations into Parkinson’s that have been done during past decades. It was packed full with lines and touchpoints that gave the audience a glimpse into the complexities of Parkinson’s research.

On the surgical front Dr. Kalia spoke about deep brain stimulation (DBS) and of research into the development of smaller batteries, which may be placed under the scalp, rather than in the chest, or may even become part of the electrode which is inserted into the brain. And while current DBS therapy is “on” all the time, future iterations may self-adjust to brain stimuli and operate only as needed.

“And while we are able to treat the symptoms of Parkinson’s with  current surgical and medical therapies, and make lifestyle  recommendations to improve the quality of life for our patients,  we are still not able to halt or slow the progression of the disease itself or reverse its effects,” said Dr. Kalia. It is in the field of molecular biology that he believes the route to a cure will be found.

His current research involves studying the causes of Parkinson’s disease – and in particular the proteins involved in the death of dopamine-producing brain cells.  Kalia is focused on so-called “chaperone” proteins, particularly one called BAG5. This protein can accompany another protein called alpha-synuclein. Misfolded or misshaped clumps of alpha-synuclein can accumulate in dopamine-producing brain cells and cause them to die. Since these brain cells are critical to controlling movement, their death causes Parkinson’s disease.

Identifying the role of these chaperone proteins and their relationship to alpha-synuclein would go a long way to solving the puzzle of why the dopamine neurons die, Kalia believes. He thinks “bad” or malfunctioning chaperone proteins cause the alpha-synuclein to clump up in the brain cells. Knocking down these bad chaperone proteins might stop the aberrant process.

Using a type of gene therapy that delivers a virus to dopamine-producing neurons, Kalia hopes to eliminate the bad chaperone proteins and save the brain cells that are so critically involved in the motor symptoms of Parkinson’s disease.

“If we inhibit these molecules, we have the potential of stopping or reversing the degenerative process, and this could be a novel class of therapies for the disease,” Kalia says.

Dr. Kalia’s research into BAG5 is funded by PSC’s National Research Program. “The seed money granted by Parkinson Society Canada is critical to our work,” he says. “There is no doubt that the limiting factor in our progress is funding for research. The PSC grants make a world of difference in getting us started and in helping us apply for other grants.”

Dr. Kalia’s partner in work and life is Lorraine Kalia, a neurologist in the Movement Disorder Centre at the Toronto Western Hospital. She is also an assistant professor at U of T and a neuroscientist at TWRI and Tanz Centre for Research in Neurodegenerative Diseases (CRND). Lorraine Kalia offered clinical perspectives during the question and answer portion of the presentation. With adjoining labs, and complementary clinical practices, the Kalias are among Canada’s elite group of Parkinson’s specialists, dedicated to offering the best of care while advancing the way to a cure for this life-changing disease.

“I look forward to the day when I can tell people living with Parkinson’s that we can halt the progression of the disease and perhaps one day even reverse its effects,” says Suneil Kalia.

Don’t miss Dr. Naomi Visanji’s webinar on August on August 18, 2015, from noon to 1 p.m. EDT. Click here and pre-register to attend.