Parkinson Canada researchers passionate about improving lives today and aiming for a cure tomorrow

PhD candidate Anita Abeyesekera is investigating how people with Parkinson’s hear their own voice in order to better understand the factors involved in the speech disorder associated with the disease.

Clinician scientist Dr. Michael Schlossmacher and PhD candidate Anita Abeyesekera are both working to improve the lives of people living with Parkinson’s and add to our knowledge towards an intervention that will one day allow us to stop it. Whether they are established experts, or just beginning their careers, Parkinson’s researchers count on funding from the Parkinson Canada Research Program to test new theories leading to larger studies and to discover a critical piece of the complex puzzle that is Parkinson’s disease.

At the Ottawa Hospital and the University of Ottawa, Dr. Schlossmacher and his colleagues are testing the five elements of his new PREDIGT Score tool, which could be used to determine which healthy adults are most likely to develop Parkinson’s disease in later years. The five elements include: PD-specific genetic factors; exposure to environmental factors; interactions between the two that initiate long lasting tissue changes; gender; and the passage of time.

A $45,000, one-year, pilot project grant from the Parkinson Canada Research Program will enable him and co-investigators Dr. Tiago Mestre and Dr. Doug Manuel, to validate the PREDIGT Score, which has the potential to be used in larger clinical trials.

“Validating the PREDIGT Score would be transformative in several ways,” says Schlossmacher. “Accurately predicting PD based on an easy-to-calculate score would help us to identify at-risk persons and focus more on those factors that predispose people to the illness with the intention to try to modify them. In turn, this information could help direct future trials that seek to prevent the illness. Ultimately, we envision helping doctors and nurses identify, counsel and care for at-risk individuals with appropriate interventions.”

Dr. Michael Schlossmacher is validating elements of his new PREDIGT Score tool, which could be used to determine who is likely to develop Parkinson’s disease in the future.

At Western University in London, Anita Abeyesekera’s research could lead to new treatments for individuals experiencing speech disorders associated with Parkinson’s. Low speech intensity, also known as hypophonia, is the most common speech symptom experienced by individuals with Parkinson’s disease. She will be investigating whether the speech disorder is associated with the abnormal processing of what an individual hears into the creation of their speech (called sensorimotor integration deficit.) She will alter participants’ speech and analyze their response to the feedback to determine how this contributes to low speech intensity and other symptoms.

A $30,000, two-year, graduate student award from the Parkinson Canada Research Program enables Abeyesekera to pursue her research, which will contribute to our understanding of Parkinson’s disease, particularly the importance of sensory systems in speech disorders. Proving her theory could lead to new treatments to improve the speech, and quality of life, of people living with Parkinson’s.

“That’s what we’re passionate about as researchers,” says Abeyesekera, “improving treatments for the immediate benefit of individuals living with chronic disease and in time finding a cure.”

Parkinson Canada has great expectations for the 25 researchers receiving new grant, fellowship and student awards during the next two years. Each of them will advance our knowledge of Parkinson’s, a complex brain disease, as well as interpret and share their knowledge with other researchers and health professionals. Those receiving clinical fellowships will also treat individuals living with Parkinson’s. Many of these researchers will continue their connection with Canada’s Parkinson’s community

As of September 2017, Parkinson Canada is proud to support 25 new grants, fellowships and student awards*. These represent a total of $1,323,369 to support new research projects in Canada during the next two years. Including the eight research awards in their second year, and the 25 new projects, the Parkinson Canada Research Program will invest $1,643,369.

New awards include:

  • 10 Pilot Project Grants
  • 3 New Investigator Awards
  • 3 Basic Research Fellowships
  • 1 Clinical Movement Disorders Fellowship
  • 1 Clinical Research Fellowship
  • 7 Graduate Student Awards

The Parkinson Canada Research Program has funded 528 research projects, totaling more than $27 million, since 1981.

*A detailed list of the 2017-2019 researchers, their project titles, affiliations and funding amounts can be found at www.parkinson.ca.

Parkinson Canada is the largest, non-government funder of Parkinson’s research in Canada. Donors fuel investment in science that explores most aspects of the disease, including: causes, complications, cognitive impairment, biomarkers, neuroprotection and quality of life.

About the Parkinson Canada Research Program

Since 1981, the Parkinson Canada Research Program has invested more than $27 million in research that has expanded our knowledge of Parkinson’s disease. The program invests in:

  • High-quality, innovative Canadian research by established and promising investigators.
  • Discovery-stage research where investigators test new theories and pursue promising new leads.
  • Researchers at the beginning of their careers in order to foster the next generation of Parkinson’s scientists.
  • Novel research to build greater capacity, promote creativity and engage more researchers.
  • Specialist training for clinicians to build capacity in high quality care for people with Parkinson’s.

The Parkinson Canada Research Program explores related disorders including: Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), and other Parkinson’s conditions and the impact these diseases have on society.

Captions:

PhD candidate Anita Abeyesekera is investigating how people with Parkinson’s hear their own voice in order to better understand the factors involved in the speech disorder associated with the disease.

Dr. Michael Schlossmacher is validating elements of his new PREDIGT Score tool, which could be used to determine who is likely to develop Parkinson’s disease in the future.

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Understanding how Parkinson’s spreads through the brain

Abid Oueslati, Assistant Professor

Abid Oueslati’s fascination with the brain began as part of his initial experiences with scientific research in France. Later, while pursuing post-doctoral studies in Switzerland, he began to tackle Parkinson’s disease as a bio-molecular puzzle whose solution could improve the lives of patients around the world.

One molecule in particular captured his imagination: the intricate protein known as α-synuclein, which can spread through the brains of Parkinson’s disease patients as the ailment develops. For Oueslati, who is now an assistant professor in molecular medicine at Laval University, this behaviour closely resembles that of another problematic protein, the notorious prion.

Scientists first identified prions about 20 years ago in the search for the causes of mysterious plaques that formed in the brain and broke down its network of connections, leaving an affected person or animal increasingly disabled. The culprit turned out to be these strange proteins whose molecular structures are folded in awkward patterns and move between brain cells to disrupt healthy tissue. Oueslati has seen a similar pattern to the way α-synuclein affects the brain.

“It makes plain the progress of the disease,” he says. “It’s opening up a new area of research into Parkinson’s disease because it shows a new mechanism. It also offers new opportunities for new therapies — stopping or at least reducing the disease progress.”

Parkinson Canada is supporting Oueslati’s work, which he regards as the initial building block that will help him establish an ongoing research program in this field. He received a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award, from the Parkinson Canada Research Program.

“This is a tremendous help to jump-start this project,” he explains. “We’ll be able to collect data and publish the first conception of what we want to do.”

Among the most significant developments he anticipates will be a far more effective laboratory procedure for studying Parkinson’s disease in mice. Researchers currently try to mimic the condition by adding excessive amounts of α-synuclein into the brains of these animals, but the technique yields haphazard results. By applying a model of prion-like propagation, however, Oueslati has been able to use viruses to deliver the protein into the brain in a way that more closely resembles the advance of Parkinson’s.

“The problem today is one of reproducibility,” he explains. “Our purpose is to develop an accurate, simple, and controllable model.”

He is also taking stem cell samples from Parkinson’s patients and growing them in culture to learn more about genetic features that might be responsible for the condition in the first place.

“This is a new field,” Oueslati notes, “which could show the vulnerability of these cells to some kind of external event that leads to Parkinson’s.”

Among the most significant developments he anticipates will be a far more effective laboratory procedure for studying Parkinson’s disease in mice. Researchers currently try to mimic the condition by adding excessive amounts of α-synuclein into the brains of these animals, but the technique yields haphazard results. By applying a model of prion-like propagation, however, Oueslati has been able to use viruses to deliver the protein into the brain in a way that more closely resembles the advance of Parkinson’s.

“The problem today is one of reproducibility,” he explains. “Our purpose is to develop an accurate, simple, and controllable model.”

He is also taking stem cell samples from Parkinson’s patients and growing them in culture to learn more about genetic features that might be responsible for the condition in the first place.

“This is a new field,” Oueslati notes, “which could show the vulnerability of these cells to some kind of external event that leads to Parkinson’s.

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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Your gift of stock offers tax benefits and supports research

A donation of publicly traded stock or securities is one of the easiest and most effective ways you can support Parkinson Canada. These types of gifts are a win-win opportunity for donors because they eliminate capital gains taxes and support Parkinson Canada with an influx of capital that can be used to increase funding for Parkinson’s research.

You can avoid the capital gains tax that you would normally have to pay if you sold the securities and then donated the proceeds. And Parkinson Canada will issue you a charitable tax receipt for the fair market value of the security on the date of transfer into our brokerage account. You can donate securities now, or as part of your estate planning.

How does it work?

Here’s an example of the benefits of donating stocks.

Consider a donor in the 46 per cent tax bracket (assuming a provincial tax rate of 17 per cent) who has already donated $200 this year to a charity (the first $200 of charitable donations allocates tax credits at a lower rate). Assume she donates stock worth $10,000, which is the current value of the shares with an adjusted cost base of $4,000.

Sell Shares and Donate the Cash Donate Shares Directly
Market Value of Securities $10,000 $10,000
Adjusted Cost Base (securities original cost) $ 4,000 $ 4,000
Capital Gains ($10,000 – $4,000) $ 6,000 $ 6,000
Tax on Capital Gains @ 46% tax bracket -$1,380 paid out in taxes $ 000
Tax Savings on Gift $ 000 $ 1,380

Chart Source: CIBC Wood Gundy

If you are thinking about making a gift of stock or securities to Parkinson Canada, we encourage you to seek independent professional advice from a tax specialist or your financial advisor.

To obtain the Guidelines for Transferring Assets and the Letter of Authorization From Donor to Broker and to explore the benefits of this type of giving, please contact Sue Rosenblat at 1-800-565-3000 ext. 3386, or PlannedGiving@parkinson.ca.

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Find what you need at the new and improved Parkinson.ca website

Whether you are a person living with Parkinson’s looking for details about an upcoming education event in your community, or a caregiver looking for advice to help a family member, or you are newly diagnosed and seeking credible information about the disease and treatments, you’ll want to visit Parkinson Canada’s new website, launched this week.

Parkinson.ca is the central hub for Canada’s Parkinson community and a beacon for everyone touched by Parkinson’s. That includes people living with Parkinson’s and their family members, caregivers, health professionals, volunteers, employees, media, governments and the public.

The new website has the features you expect in today’s digital world, like clear navigation on both desktop and mobile devices. When you visit us online, it’s easy to take action, and find what you are looking for, based on your needs and your language preference. And it’s easy to get involved with Parkinson Canada in a way that’s meaningful to you.

Your input helped us build the new website to meet your needs. When we asked you what you wanted to see and do at Parkinson.ca, many of you responded during our year-long survey of website visitors. We are grateful to each of you who took the time to tell us what’s important. With your input, we set out to build the new Parkinson.ca website to:

  1. Make it easy for you to connect with Parkinson Canada and for us to connect with you.
  2. Gather information and your input to help us continuously improve our services to you and the Parkinson’s community at large.
  3. Provide you with information and services when you need them – beyond normal business hours.
  4. Provide easy access to Parkinson Canada’s online donation and social media platforms.
  5. Create an online community that demonstrates Parkinson Canada’s values and upholds its mission and vision.

Welcome if it’s your first time visiting Parkinson.ca. Welcome back if you have visited us before. Want to share your questions or comments?  Send your feedback to communications@parkinson.ca

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Living a good life with YOPD

Natasha McCarthy with her husband Aaron and daughters Samantha and Izabelle, as Natasha’s Ninja’s at Parkinson SuperWalk 2016.
Natasha McCarthy with her husband Aaron and daughters Samantha and Izabelle, as Natasha’s Ninja’s at Parkinson SuperWalk 2016.

Four years ago at the age of 36, Natasha McCarthy of PEI was surprisingly relieved to find out she had young onset Parkinson’s disease (YOPD). It took 15 months for her doctor and specialist in New Brunswick to make the diagnosis. At the time, she was working fulltime, her daughters were five- and two- years- old and her husband was working in Alberta, with extended visits home to the island.

“I actually thanked my specialist for telling me I was not crazy, when he confirmed my diagnosis,” says McCarthy. “The long and stressful process has you doubting yourself,” she adds. McCarthy also had a grandmother and two aunts with multiple sclerosis, so that possibility was first ruled out. Although her diagnosis wasn’t confirmed until September of 2013, she began taking levodopa in March of that year and it helped with her symptoms.

Blair Sigurdson in Winnipeg had his Parkinson’s diagnosis confirmed six years ago, just before his fiftieth birthday. “But, I think I’d had it for at least 13 years by then,” he says. Sigurdson didn’t experience tremors, but more slowness and rigidity in the years before his diagnosis. At one point he took an extended leave from work, and underwent strengthening therapy that enabled him to return to work. “But once I was back at work, and no longer in the gym so much, my symptoms returned.”

Like McCarthy, Sigurdson had a young family when he was formally diagnosed: a 10-year-old daughter and an eight-year-old son. YOPD presents unique challenges since most people are in the midst of raising families and pursuing careers. YOPD is an unexpected and unwelcome intruder into their busy lives, affecting not only the individual, but the daily lives of the entire family.

McCarthy explains her approach to the unique challenges of YOPD this way: “You and Parkinson’s are going to be together for a very long time. It’s going to be a long, hard road, if you decide to lie down and give up. It’s best to take charge and concentrate on what you can do, not what you can’t.”

Both Sigurdson and McCarthy are proponents of physical activity as part of their self-care. McCarthy horseback rides, and recently completed a five-day, 273 km. cycling event across PEI in support of Parkinson Canada. “It was the hardest thing I have ever done physically, and a lot more emotional that I ever thought it would be. I cried a lot. Not just from the exhaustion of cycling in both heat and torrential rain, but from what I was feeling and the support we received.”  The event raised almost $7,000 and garnered plenty of media attention and public awareness.

Blair Sigurdson (front row, far right), Marc Pittet, Blair’s daughter Jenna, his wife Karren and his son Tyler at Parkinson SuperWalk in Winnipeg, earlier this month.
Blair Sigurdson (front row, far right), Marc Pittet, Blair’s daughter Jenna, his wife Karren and his son Tyler at Parkinson SuperWalk in Winnipeg, earlier this month.

Sigurdson has also climbed a few mountains – literally. In the last few years, he has tackled trails rising more than 14,000 feet in the mountains of Colorado, with another fellow living with Parkinson’s. “When I was diagnosed, my doctor told me to take my medication and not exert myself. These days we know that physical activity can help alleviate symptoms, so I push myself because it works for me.”

While these two have completed some exceptional feats, they encourage others with YOPD to simply pursue an activity they love and focus on the positive aspects of their lives. They also recommend seeking out a support network beyond family and friends and venture into the Parkinson’s community. “No one knows better than someone with Parkinson’s what you are going through,” says McCarthy.

Blair and Natasha were discouraged when they attended their first support group meetings. Everyone was much older, with more noticeable symptoms. “It was actually terrifying at first to see your future in the flesh,” says McCarthy. Since then, they both came to appreciate the groups and to see their value. And now, both are involved with Parkinson Canada support groups especially for people with YOPD.

In the Maritimes, a group of about 25 people with YOPD or newly diagnosed with PD, meets monthly via videoconference and in Winnipeg the YOPD support group of about 35 members meets in person each month. “Even members who don’t come out often, tell me they feel better just knowing it is there,” says Sigurdson, who is the group facilitator.

He sets up guest speakers for most meetings, often health professionals such as a speech language pathologist, a neurologist and a physiotherapist, to help people live their best life with YOPD. There is also time to share and ask questions of one another. “It helps to know you are not alone,” he says. He also keeps the group informed about other Parkinson Canada resources, like webinars and educational events, that they might find helpful.

McCarthy says the PEI chapter of Parkinson Canada works hard to provide support for people in the area living with Parkinson’s. In addition to a monthly support group meeting, they provide three activity classes each week, including movement, boxing and singing.

Natasha has also been active as a Parkinson Ambassador, meeting with MPs about genetic fairness legislation, which recently passed in the House of Commons. In addition, she was an official blogger for the World Parkinson Congress 2016 in Portland, Oregon. She attended the Congress and was surprised when other participants wanted to have their picture taken with her. “You’re the girl with the blog,” they’d say. Today her blog has almost 140,000 readers and she gets plenty of emails. Natasha finds writing the blog is therapeutic and brings her comfort.

Both Blair and Natasha still face challenges. Natasha admits that giving up work was harder than learning her diagnosis. And when both her daughters boarded the school bus last fall, she felt she could no longer claim to be a stay-at-home Mom. “I felt I’d lost my identity when I had to stop working and then again, I was depressed when both my daughters were at school.” She saw a therapist to help her establish a new routine and get past the crisis. Anxiety and depression are common symptoms of Parkinson’s.

Blair also decided to stop working two years ago. “It got to the point where I could barely function at work and couldn’t do anything with the family. I was in really bad shape.” Now, he drives the kids to school and their activities, exercises, rests, and does his best to avoid stress. “Stress really affects people living with Parkinson’s,” says Blair. “And no amount of medication seems to work when you are stressed.” And both Sigurdson and McCarthy experience sleep difficulties.

This past weekend, both Natasha and Blair took part in Parkinson SuperWalk in their communities in support of Parkinson Canada. They credit their connections to Parkinson Canada with enriching their lives, providing support, education and information and a wide network of friends who understand life with Parkinson’s.

If you or someone you know has YOPD, or is newly diagnosed with Parkinson’s disease, be sure to visit Parkinson.ca for more information. In particular, check out our Young Onset Parkinson’s Disease – Advice for Those Newly Diagnosed, (2nd edition). This booklet was developed from a Parkinson Canada funded research project led by Dr. Mike Ravenek, contains advice directly from individuals currently living with YOPD.  There is also a version for health care professionals.

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