Parkinson Canada
Your 2021 Impact
We are more powerful in what we can achieve together. Thank you for your important support and belief in our mission. You make a difference to the Parkinson’s community of researchers, care and service providers and those living with Parkinson’s.
A Message
From Our CEO
In my second year as President and CEO of Parkinson Canada, and in these unprecedented times, I am amazed at the devotion that every volunteer, participant, and employee showed towards our mission to transform the lives of Canadians living with Parkinson’s. From launching the Parkinson Advisory Council, to creating national support groups that unite Canadians from coast to coast, 2021 was a pivotal year of enhancing programs and services to respond to the needs of our community – and we couldn’t have done it without your support.
Parkinson Canada President and CEO Karen Lee delivers an overview of Parkinson Canada’s impact from coast to coast to coast in 2021 – and our mission and vision moving forward.
We focused on accessibility and responded to increased demand for our digital resources. As a result, the participant numbers in virtual support groups more than doubled, we diversified our wellness programs, and provide access to eBooks – like our recently released medication booklet – through our Information and Referral services. We are committed to moving forward with a digital-first approach to our programs and resources that help people live well with Parkinson’s regardless of where they live.
The recently released National Advocacy Roundtable Report, which you will read about in the pages to come, helped prioritize our advocacy efforts to improve access to care, and highlight issues and barriers in our healthcare system. Thanks to the 150 community members across Canada who shared their experiences, the findings from this report will provide the roadmap for our future advocacy efforts.
As a member of the research community, I know firsthand how important it is to continue to support our incredible network of researchers, collaborating and partnering to drive research innovations in finding new treatments. Our strategic direction over the coming years will ensure we invest in research rooted in collaboration, not only with healthcare professionals and expert researchers, but also with those living with Parkinson’s to ensure they continue to thrive.
None of this would have been possible without the support of our Parkinson Canada community. You have been instrumental in all of the initiatives we were able to undertake in 2021, and we couldn’t do what we do without your unwavering support. As we work to expand our national reach, we will continue to improve the delivery and accessibility of all our programs and services for the benefit of all Canadians living with Parkinson’s and their care partners.
Dr. Karen Lee
President and CEO
Thank You For Your Support in 2021
On behalf of Parkinson Canada’s Board of Directors, I am pleased to present the 2021 Impact Report.
In 2021, Parkinson Canada’s donors and supporters helped the Parkinson’s community in immeasurable ways. While it was another year of Covid-19 related challenges, it was also a year of hope and progress. Filled to the brim with achievements that brought us closer to realizing our vision of a world without Parkinson’s tomorrow and our mission to transform the lives of Canadians impacted by Parkinson's today.
Digital-first resources were embraced far beyond what anyone could predict, and the results speak for themselves. With virtual support groups and national monthly webinars reaching record-breaking attendance numbers, we made real headway in breaking down the locational barriers of access to the Parkinson’s community across Canada and the resources within it.
To our selfless volunteers, dedicated staff, and our incredible donors, I extend my sincere gratitude for the guidance in how best to deliver virtual support and remote access to the community that allowed us to be there precisely when we were needed. Our partners who helped us elevate our research program provided all-important counsel while developing a new research strategy in 2021. Our event participants showed tireless support in fundraising for a cause that impacts more than 100,000 Canadians, even during the second year of Covid-19 related restrictions. We saw Canadians from the Pacific to the Atlantic participate in SuperWalk, Pedaling for Parkinson’s, and other events to help make certain that no Canadian living with Parkinson’s has to walk (or ride) alone.
Canadians with Parkinson’s are at the center of everything we do. It's because of the continued generosity of our supporters like you that Canadians living with Parkinson’s remain hopeful for improved care and treatments now, and a future without Parkinson’s disease.
Veeral Khatri
Parkinson Canada Board Chair
Parkinson Canada Board of Directors
Parkinson Canada is governed by a volunteer Board of Directors. Board members represent a cross-section of industries, geographies, experiences, and skills, as well as people living with Parkinson’s. We acknowledge the leadership and contributions of our officers and directors.
Directors
Veeral Khatri
Chair
Laura Edgar
Vice Chair
Mike Zegers
Treasurer
Dr. Karen Lee
Secretary
Marlin Stangeland
Director
Joseph Bartlett
Director
Dr. Julie Cafley
Director
Nancy MacCready-Williams
Director
Daphne FitzGerald
Director
Dr. Wendy Horbay
Director
Margaret Hanlon-Bell
Director
Sprague Plato
Director
Judi Richardson
Director
Michael Rothe
Director
Dr. Antonio P. Strafella
Director
A Community
of Impact
At Parkinson Canada, people living with Parkinson’s are at the core of everything we do. Our quest to improve lives and find a cure for the disease affecting more and more Canadians every day makes Parkinson Canada the hub for all impacted by Parkinson’s.
With the generous support of more than 58,000 Canadians in 2021, Parkinson Canada continues to fund critical research, provide information and support, increase awareness and advocate for improved healthcare outcomes for people with Parkinson's across Canada.
See your Impact
$2,259,856
Amount raised through community fundraising events
13,000
People reached through our webinars
Calls and emails answered
4,096
120
Community support groups across the country
$790,000
17 grants awarded for a total of
in
funding
"The support group I attend guided me to the Parkinson Canada website. From there it has been a fabulous journey. As one of my favourite websites, I continue to learn each time I access the website. I visit the site often for research opportunities, podcasts, and webinars to learn what is new for Parkinson’s Disease. The educational resources are outstanding.
The best, and I mean BEST, thing was being connected with the daily "Dancing with Parkinson's" dance troupe. My physical strength and movement have improved, as well and my mental health. The people from dance class feel like a family. They are warm, kind, caring and adorable. I no longer feel isolated because I meet new people from all over the country.
To conclude, in the midst of COVID-19, Parkinson Canada has provided me with a better journey and outcome to my Parkinson life. Parkinson Canada has touched my heart and I am blessed. Parkinson Canada means the world to me!"
Karen D.
Canadian living with Parkinson’s
Parkinson Advisory Council
Launched in 2021 and comprised of 12 members from around the country, the Parkinson Advisory Council (PAC) ensures the perspective of people impacted by Parkinson’s is integrated into our strategic initiatives by providing advice to our CEO and our team members in delivering our mission.
The PAC is a diverse and inclusive representation of Canadians diagnosed with Parkinson's, care partners, family members and others with lived experience who represent diverse genders, expertise, socio-economic levels and cultural demographics. Parkinson Canada sought their input and guidance for many – if not all – of our 2021 initiatives and we will continue to absorb their invaluable perspective into our future work.
“The Parkinson Advisory Council has assumed an important role at Parkinson Canada. The PAC has allowed us – people living with Parkinson's and their care partners – to move from being passive beneficiaries of the programs and services offered by Parkinson Canada to being active participants in the co-creation, co-production and collaboration of those programs to ensure that they are meeting the evolving needs of the community.”
Larry Linton
Chair of the Parkinson Advisory Council
Members
Larry Linton
Chair
Sprague Plato
Board Liaison
Robert Kuhn
Vice-Chair
Hugh Crosthwait
Liz Loewen
Manon Day
Risa Rosenfield
Sharanjeet Kaur
Steven Iseman
Joe Van Koeverden
Lloyd Cowin
Dan Steele
Programs
and Services
Your Partners in Parkinson’s
In 2021, we tailored our services to be digital-first, so we can be accessible to everyone, everywhere.
Parkinson Canada’s programs and services reached over 10,000 Canadians impacted by Parkinson's. Below you will read how you reached us through our Information and Referral Services where our team provides free and confidential non-medical support, connected with others through support groups across the country, and accessed educational monthly webinars and up to date information and resources.
Support Groups
Support groups provide a safe space to be heard and to discover new ways to cope with the journey of living with Parkinson’s.
“The Care Partner Support Group has given me the lifeline I so desperately needed. I felt like I was on the verge of a complete mental breakdown as was probably evident in the first care givers support group meeting I attended. I so look forward to each monthly meeting. I so wish that it was more often than once a month as well!”
Care Partner Support Group member
If you or a loved one have Parkinson’s, we are here for you. You can find a support group here.
Webinars
"I would like to say this by far was the best webinar on Parkinson’s Disease I have attended. It took me a few years to get my head around having been diagnosed with Parkinson’s. You hit the nail on the head with many points that I felt I was the only one experiencing. Apathy being the latest in my life. It was encouraging to hear a speaker (in the Parkinson's Awareness Month webinar) say about staying on the couch for a day. Your panel spoke clearly and in plain not technical terms, you were extremely knowledgeable on Parkinson’s and Entertaining as well."
Anonymous webinar attendee
webinar attendees in 2021
13,000
more
than
Information and Referral Services
In 2021, our Information and Referral service team heard the very real concerns of Canadians living with Parkinson's and their care partners that continued to be exasperated in the second year of the Covid- 19 pandemic.
We heard an increase in the experiences of anxiety, apathy and depression from people living with Parkinson’s. We heard an urgency from care partners trying to find resources and support for their loved ones from afar. And we heard an increase in the overall compounding effects of physical isolation due to Covid-19.
Knowing the many benefits to providing digital resources, we are still very aware of the need for human connection and hold the deeply personal stories we hear very close to our hearts.
We feel privileged to provide real-time support to Canadians living with and impacted by Parkinson’s. During our conversations in 2021, we shared programming links, resources like our Introductory guide to Parkinson’s, and virtual options to meet the exercise requirements to keep moving safely and productively, like the “Be Active” exercise options on our website. We shared educational resources when access to care/specialists was limited at best – a problem that certainly existed pre-Covid. And we organized virtual community events to help engage our Parkinson’s community.
Wellness Partnerships
Recognizing the benefit of exercise on the overall health and well-being of people living with Parkinson’s, we focused on developing partnerships for different wellness programs across the country specific to Parkinson’s.
Dancing with Parkinson’s is one such partner that is exercise-based, backed by science and has been ensuring Canadians with Parkinson’s were able to stay active through online classes in 2021.
Digital Resources
In 2021, we developed an online database to help our Parkinson community easily access information from our booklet, “Medications to Treat Parkinson’s Disease.” The booklet was produced to provide an overview of the medications used to treat both the motor and non-motor symptoms of Parkinson’s. Included are brief descriptions of the pharmacological action of the drugs, tools to track dosing of medications, overview of the common and relevant adverse effects and potential interactions with foods, to name a few.
While this booklet serves as a resource for healthcare professionals, it also empowers Canadians living with Parkinson’s to know and understand their options and play a critical role within their own care team.
Research
Parkinson Canada's research program helps researchers in their search for new and better treatments for those living with Parkinson's.
In 2021, Parkinson Canada invested in 17 researchers and clinicians totaling $790,000. With support from donors like you, we continue to fund research dedicated to finding a cure and improving the quality of life for people affected by Parkinson’s.
Parkinson Canada in partnership with Brain Canada, founded the Canadian Open Parkinson Network (C-OPN), an initiative to accelerate Parkinson’s research by bridging clinicians and researchers, data and resources with the goal to improve the lives of those living with Parkinson’s.
2021 involved building the network and database by bringing more participants and researchers. C-OPN has opened clinical sites across the country to collect biological and survey data, and continues to expand and reach additional communities and researchers across Canada.
The database containing anonymous participant data can now be accessed (as of March 2022), and researchers across the country have begun to utilize this data to make those exciting new discoveries.
Research and Clinical Advisory Committee
In 2021, we established the Research and Clinical Advisory Committee (RCAC). The committee oversees Parkinson Canada’s Research Competition and advises Parkinson Canada’s Board of Directors on the state of Parkinson’s research, clinical care and emerging trends relevant to the Parkinson’s community. The makeup of the committee mirrors the professionals who come together to provide a multidisciplinary care approach for Canadians with Parkinson’s. It includes members of the scientific community, the clinical community, health professionals engaged in patient care, patient advocates and a director of the Parkinson Canada board.
Members
Dr. Martin McKeown
Chair
Dr. Wendy Horbay
Vice-Chair
Dr. Richard Camicioli
Dr. Susan Fox
Dr. Jennifer G. Goldman
Dr. Heidi McBride
Dr. Tiago A. Mestre
Dr. Julie Nantel
John Parkhurst
Dr. Ronald Postuma
Dr. Heather Rigby
Dr. Angela Roberts
Dr. Vesna Sossi
Dr. Antonio P. Strafella
Dr. Stephen Workman
Yu Yan Poon, RN
"There’s a huge need to support research cooperation in order to advance our understanding of Parkinson’s: its prevention, early detection, and effective and personalized treatment."
Tony Zwig and Thea Caplan
In 2021, Tony Zwig and Thea Caplan, a couple from Ontario, donated a transformational gift of $750,000 to Parkinson Canada. A sizable portion of which helped to fund the 2021-2023 Parkinson Canada research competition. Their generosity has empowered us to drive research innovation towards personalized treatments for people with Parkinson’s and ultimately a cure.
Tony’s mother lived with Parkinson’s. Thea’s father lived with another neurological condition: Guillain-Barré syndrome.
The couple's shared experience of parents with neurological conditions gave them an understanding of how research collection done on a large scale can begin to fill the knowledge gaps the research community still has about Parkinson’s.
Tony and Thea have a deep appreciation for the initiative of C-OPN as they understand that the significant discoveries required to improve the lives of people living with Parkinson’s are not possible in any single lab or clinic in the world.
Their transformational gift will help to shape future research and accelerate knowledge across the field. We are grateful and thank them for their support.
Advocacy
Parkinson Canada is committed to raising the voice of people impacted by Parkinson’s to advance solutions toward improved care and quality of life.
The National Advocacy Roundtable Report
The final product of more than 150 conversations with Canadians impacted by Parkinson’s and the healthcare professionals who work with them, this national report summarizes the unique realities faced by members of the Parkinson’s community across the country. Following the in-depth discussions from eight regional roundtables covering every province and territory and one national roundtable, the report illuminates the key themes expressed by the Parkinson’s community around improving the quality of life for people living with Parkinson’s in Canada. These priorities will help provide a roadmap to the organization in developing our future advocacy work to support Canadians affected by Parkinson’s.
Download the National Advocacy Roundtable Report to see the three priorities guiding our future advocacy work and to hear more stories from Canadians affected by Parkinson’s like the one below that helped shape our roadmap.
“The lack of facilitated care in our region to support us through this process has been very frustrating. It is so difficult to navigate the care. How do you get proper care when you don’t have people advocating for you?”
Jessica Brace, care partner, Yellowknife, Northwest Territories
There were participants at the National Roundtable who live in more under-serviced, rural parts of the country where no Parkinson’s care coordinator nurses, neurologists nor Movement Disorder Specialists live or work. Their input shed light on the varying degrees of access to care for Canadians living with Parkinson’s, which was echoed from coast to coast to coast by many others. Making it a central takeaway from the conversations and putting it as one of three priorities in our advocacy roadmap.
One of the care partners who participated in the National Roundtable is based in the Northwest Territories and has had many challenges over the past eight years with accessing care for her father who has Parkinson’s.
The increase in virtual medical care since the COVID-19 pandemic began was an unexpected benefit for the care partner and her family. She went on to share that through telehealth she managed to secure an appointment for her father with a neurologist in Calgary, Alberta and during that meeting they learned about MDSs. They were able to get an appointment with a MDS and recently returned from Calgary where her father had the Duodopa® surgery.
The care partner shared that about a week after the surgery a nurse called to check in on her father. The nurse gave them pertinent information on other medications, discussed physiotherapy options, speech therapy options, diet considerations, etc., and gave them the comfort of knowing there was someone there to offer them support.
“This was the first time in our eight-year Parkinson’s journey that someone from the medical community contacted us to check in and provide information and answer our questions. This was a very emotional experience that brought me to tears and reinforced the importance of having proper nurse care.”
Jessica Brace, care partner, Yellowknife, Northwest Territories
Our Volunteers
Volunteers are the lifeblood of Parkinson Canada. Without the continued support of our volunteers, we wouldn’t be reaching Canadians living with Parkinson’s across the country.
Hundreds of volunteers lent their time and skills in 2021. The contributions of volunteers can be felt in every facet of our organization. Everything from events, to support groups, from webinar guests to advocacy ambassadors, and everyone in between.
Reflecting on the results we achieved in 2021, it's easy to see that this is a community of impact. Because you chose to support your fellow Canadians impacted by Parkinson’s, this community had access to more resources, more events, more support groups, and more community members to share their experiences with in 2021.
Volunteer Spotlight: Charline LeBlanc
From her home in Bouctouche, New Brunswick, Charline LeBlanc spent 2021 becoming a top-notch support group facilitator, SuperWalk fundraiser, and Parkinson Canada Champion.
Events
Our second event season impacted by the COVID-19 pandemic showed us your dedication in making a difference. Whether it was attending the inaugural Pedaling for Parkinson’s Maritimes ride, Growling Beaver Brevet, or hosting a “Walk Your Way,” you continued to show resilience to help raise money and awareness to help transform lives.
The team at Parkinson Canada is grateful to every event organizer’s dedication to event execution, every volunteer who helped make these events happen, every participant who attended.
Amount raised through community fundraising events
Participants from all events
$2,259,856
more
than
1,600
Event Spotlight: The Growling Beaver Brevet
The Growling Beaver Brevet invites participants to ride for wellness while fueling research and raising awareness for Parkinson Canada.
The Growling Beaver Brevet was founded in 2015 by cyclists and members of the Parkinson Canada family from Collingwood, Ontario.
Inspired by the Davis Phinney Foundation’s “Live Well Today” philosophy, the Growling Beaver Brevet is a social (non-race) ride to celebrate cycling with 250 cyclists riding 40, 60, 100 or 200 km routes through the scenic Beaver Valley at what is often the height of the fall colours. The day features the Beaver Valley and Georgian Bay communities and merchants that have supported cyclists through the summer season.
The routes have been conceived with a mix of tarmac and scenic country gravel roads. In the European "brevet" tradition, every rider carries a “passport” that is authenticated at checkpoints.
In 2021, the ride raised $437,233 for Parkinson Canada’s wellness initiatives, programs and research.
2021 Numbers and Financial Reports
A national registered charity, Parkinson Canada fulfils its mission through the generosity of donors and is an accredited organization under the Imagine Canada Standards Program
Parkinson Canada Program Expenses
Education & Services
Research
Community services
Advocacy
$ 2,255,625
$ 1,644,875
$ 431,994
$ 251,639
49%
36%
9%
5%
Parkinson Canada Source of Revenue
Individual Giving
Events
Corporate & Foundation Donations
Planned Giving
Investment Income
Other Revenue
$ 6,073,708
$ 2,259,856
$ 1,576,482
$ 1,314,439
$ 650,330
$ 442,673
49%
18%
13%
11%
5%
4%
Statement of Financial Position as at December 31
Assets
Current
Cash
Short-term investments
Accounts receivable
Prepaid expenses and other assets
Investments
Long-term accounts receivable
Property and equipment
Total assets
Liabilities
Current
Accounts payable and accrued liabilities
Current portion of research grants payable
Deferred revenue
Research grants payable
Deferred revenue
Net assets
Unrestricted
Operating Reserve
Canadian Open Parkinson Network Reserve
Research Reserve
Invested in property and equipment
Endowment funds
Total liabilities and net assets
2021
$ 549,375
5,185,661
1,004,978
253,833
6,993,847
8,128,037
107,500
638,624
$ 15,868,008
$ 602,463
812,576
106,188
1,521,227
290,000
363,740
2,174,967
6,805,599
5,056,318
250,000
712,500
638,624
230,000
13,693,041
$ 15,868,008
2020*
$ 418,046
3,133,416
963,758
253,884
4,769,104
7,477,892
50,000
672,715
$ 12,969,711
$ 394,021
1,177,624
233,914
1,805,559
312,576
400,115
2,518,250
3,307,428
5,056,318
498,000
687,000
672,715
230,000
10,451,461
$ 12,969,711
Income Statement
For the Twelve Months Ending December 31
Revenue
Planned giving
Individual giving
Events
Corporate and foundation donations
Investment income
Other
Expenses
Research, advocacy, education & support services
Philanthropy
Operating and administration
Excess of revenue over expenses
2021
$ 1,314,439
6,073,708
2,259,856
1,576,482
650,330
442,673
$ 12,317,488
4,584,133
2,734,093
1,757,682
$ 9,075,908
$ 3,241,580
2020*
$ 989,058
4,100,023
1,927,535
1,182,726
513,778
1,107,958
$ 9,821,078
4,543,760
2,858,005
2,180,568
$ 9,582,333
$ 238,745
* The Organization has determined that the research grant commitments are an obligation of the Organization at the time that the research grant agreement is signed and the liability and expense should be recorded at that time. Historically, research grants have been recorded and expensed based on the timing of scheduled payments. Similarly, it was determined that the research contracts to fund specific grants are an asset. Historically, research contracts to fund specific grants have been recorded as revenue based on the timing of scheduled collection. As a result, the balances for the year ended December 31, 2020 have been restated.
Thank YOU as always
Thank you for investing in making life better for every Canadian living with Parkinson’s. Thank you for choosing to make a stand with us as we work to change the future. Thank you for helping us search for a cure. Thank you for envisioning a world without Parkinson’s.
