Government takes a big step forward to address the needs of the Parkinson’s Community

Health Canada and the Public Health Agency of Canada (PHAC) are adding Parkinson’s disease to the Canadian Chronic Disease Surveillance System (CCDSS). The decision to include Parkinson’s disease in the CCDSS is a result of Parkinson Society of Canada’s direct involvement in the recent National Population Health Study of Neurological Conditions. This welcome development will give researchers, medical practitioners and policy makers access to a wide range of substantive data on Parkinson’s.

“The decision to add Parkinson’s to the CCDSS indicates that our concerns are being taken seriously by policy makers,” says Joyce Gordon, President and CEO, Parkinson Society Canada. “And the valuable data collected and reported will enable all stakeholders to make evidence-based decisions in support of those living with the disease.”

The CCDSS, in partnership with the federal government and PHAC, is a database of provincial, territorial and federal administrative information, which includes data on physician billing, hospitalization and resident registry databases.

This database contains key medical indicators relevant to those living with Parkinson’s, dating back to 2000. PHAC has assured Parkinson Society Canada that the first report on these indicators will be available within five years, although it could be available sooner. The report and the data collected will foster greater dialogue and knowledge transfer about Parkinson’s in terms of public policy, clinical guidelines and research.

Parkinson Society Canada is looking forward to gaining access to the information in the first report and sharing the results with the Parkinson’s community. In the meantime, we will continue to work closely with the Public Health Agency of Canada to advance its understanding of Parkinson’s disease and the needs of Canadian’s living with Parkinson’s, their families and their care providers.

Community spirit helps Parkinson SuperWalk hit the 25-year mark

Amanda Mulder, right, with her friend Nicole, pause for a photo during the 2014 Parkinson SuperWalk in London, Ontario. Amanda took part in honour of her grandfather John Steenbergen.
Amanda Mulder, right, with her friend Nicole, pause for a photo during the 2014 Parkinson SuperWalk in London, Ontario. Amanda took part in honour of her grandfather John Steenbergen.

Back in 1990 when seven members of the Toronto (Ontario) Chapter held the first SuperWalk, it’s likely that they dreamed about bigger success in the future. Twenty-five years later, after steady growth, Parkinson SuperWalk inspires participation by more than 14,000 walkers and volunteers in more than 115 communities from coast to coast.

Thousands more Canadians sponsor walkers in support of Canadians living with Parkinson’s, raising funds for support services, education, advocacy and research. Last year’s SuperWalk raised more than $2.9 million. This year’s Parkinson SuperWalk has a nation-wide goal of $3 million and takes place on the weekend of September 12 and 13. National sponsors for 2015 Parkinson SuperWalk are Naturegg Burnbrae and Roots Canada.

We are very proud to be a long-standing community partner of Parkinson SuperWalk,” says Margaret Hudson, President of Burnbrae Farms. “We applaud the contributions of the everyday heroes who inspire hope in the tens of thousands of Canadians living with this disease, as well as their families and care givers.”

One of those everyday heroes is Amanda Mulder, 23, who hobbled through last year’s SuperWalk in London, Ontario on crutches, in remembrance of her grandfather John Steenbergen, who lived with Parkinson’s. He died in 2013 at 80 years of age.

“We had a special bond,” she says. “He understood me and I understood him. He was my rock, and I loved him more than I ever thought possible. He had Parkinson’s disease for 10 years and I saw how hard it was on him.”

Last year, Amanda raised $570 with the generous support of her family and friends. This September, she hopes to run the route in London, as long as her leg is fully recovered. And, she’ll be calling on the support of her family and friends once again to sponsor her efforts – or join her in the event.

Amanda received an added bonus for her efforts last year; she won one of the national draw prizes – a 60-inch Sharp AQUOS® LCD television. And while she’s enjoying the TV, her real prize has been supporting others living with Parkinson’s in honour of her grandfather.

“I hope that one day this disease will be non-existent. Seeing my grandfather having to deal with the challenges that a Parkinson’s diagnosis presents broke my heart every day and if I can help even in the slightest to make sure no one else has to face those challenges, I will do whatever I can.”

Another of our community heroes Hanif Balolia also had a grandfather living with Parkinson’s who, along with his mother and father, inspired him to get involved in Parkinson SuperWalk, both personally and as a business owner.

It was Balolia’s mother who was the hero. He remembers his mother flying to East Africa to visit and help care for his grandfather. “She would be there for long periods, sometimes months. I know she carried the family burden,” recalls Balolia. His father has also always encouraged him to give back to those who are less fortunate, with both time and money.

This year, Balolia’s firm will enter a corporate team in the Parkinson SuperWalk, and the company will donate prizes for the ‘Everyday Heroes’ contest, which launches online in June.

You can join Hanif and Amanda 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 your regional Parkinson Society office for local SuperWalk details.

End Of The Roll promotes Parkinson’s Awareness Month

Each month, End Of The Roll features a charity to spotlight. End Of The Roll has identified Parkinson Society Canada as their special cause during April, Parkinson’s Awareness Month. As a locally owned company in Canada, they truly care about the communities we both are a part of, and the families that make up those communities. End Of The Roll recognizes that when Parkinson’s disease affects one person, it affects the whole family and the community of people around that person.

End Of The Roll will be featuring Parkinson Society Canada throughout April on their website, blog and social media accounts to help raise awareness and funds to improve the lives of the tens of thousands of Canadians affected by Parkinson’s disease. Visit their blog to read more.