2020 Gratitude Report: Parkinson Canada
Transforming the lives of People Living with Parkinson's.
NO MATTER WHAT.
“I’ve chosen not to let Parkinson’s define me.
It is a part of me, but it’s just a small part of me.”
David Gill
Living with Parkinson’s
Thank You For Being There in 2020
Thank you for consistently supporting the Parkinson Canada team with care, friendship and generosity. Your dedication and solidarity during these extraordinary times ensured we could continue providing support for everyone who needed us. We couldn’t have done it without you.
Thank you for your commitment to driving and funding innovation and research. Your support and participation are impacting more people affected by Parkinson’s and supporting important programs and initiatives, such as the innovative Canadian Open Parkinson’s Network. This incredible network is increasing the rate of research discovery and driving exciting new breakthroughs that could change everything for people living with Parkinson’s.
Today and always, thank you for partnering with us and advocating for the entire Parkinson’s community in Canada, as we face the future with hope for a better life today for People with Parkinson’s and imagine a world without Parkinson’s tomorrow. Thank you for raising funds, raising your voices, and raising hopes for a future free from Parkinson’s. Under the strong leadership of our new CEO, Dr. Karen Lee, I’m confident that together, we’re going to get there.
Marlin Stangeland
Parkinson Canada Board Chair
Karen Lee, PhD
President and CEO
“After joining Parkinson Canada just over a year ago, I set off on a virtual, eight-session, national listening tour. I wanted to hear from you directly what we needed to do to change lives and stop Parkinson’s permanently. What you told me has helped us reshape our work and pivot to better serve you. I’m still here. I’m always listening. And I’ll keep working relentlessly to create a future free from Parkinson’s. No matter what.”
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“When the GP said it was Parkinson’s, I didn’t want to believe it. I only thought bad things. I thought it was a death sentence. I found out it wasn’t.”
Dulcie Webb
Living with Parkinson’s
Impact You Made Incredible Things Happen in 2020
No matter the fact we were immersed in a global pandemic. No matter the hardship and heartache. No matter the challenges you faced personally. NO MATTER WHAT, you stepped up to make 2020 a year filled with impact. This past year, you responded with the same resilience that people with Parkinson’s exhibit daily in the face of their symptoms. You shared your experience, you leaned on each other, and you joined in to find out more about supports and exciting new research projects. Here are some of the powerful ways your support helped make a difference for Canadians with Parkinson’s in 2020.
5,340
We received 5,340 calls for information and referral. People living with Parkinson’s made 40% of those calls. Caregivers made 32%.
56
We hosted 56 online exercise classes with over 10,000 total views.
Impact A Year of Community Connection
In 2020, you learned that support is all around you despite the need for social distancing. Together, with our Parkinson's Awareness Month campaign and e-book highlighting your stories, we showcased that with Parkinson’s, you are not alone.
“My greatest satisfaction and joy in life has always come from connecting with others, sharing ideas and observations about life, love, kids, dreams, disappointments, hopes for the future, and lessons from the past.”
Heather
Contributor to the You Are Not Alone e-book
1,180
We helped 65 different support groups transition to phone or online meetings during COVID-19, with more than 1,180 hours of support.
82,000+
Thanks to you, we registered 82,000+ views of online webinars.
1,387
Thanks to you, we registered 1,387 downloads of our “You Are Not Alone” e-book.
Impact Fueling Advances in Parkinson’s Research
Because of your generosity, Parkinson Canada awarded 20 research grants, fellowships and awards in 2020, committing over $1-million to new projects. It’s an exciting time and we’re so grateful to YOU for making this kind of groundbreaking research possible.
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New drugs to treat Parkinson’s
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Uncovering better speech and language therapies
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Studying ways to stop dyskinesia, involuntary movements
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Looking at how to provide essential deep brain stimulation without surgery
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And a range of other projects focused on increasing access to care; improving treatments; and supporting research into the cure
20
research grants, fellowships and awards awarded by Parkinson Canada in 2020
$1M+
committed to new research projects
$1.6M
in total research investment; including C-OPN
The fact Parkinson Canada was willing to look outside an established Parkinson research group is going to be the key to solving these problems.
Dr. Matthew Krause
Research Associate, 2020-2022 research cycle
Impact SuperWalk and Pedaling for Parkinson’s
The COVID-19 pandemic may have changed how you walked or rode in 2020, but it didn’t impact your dedication to these events. It didn’t affect your determination to raise money, raise awareness, and help change lives. A million thanks for your support.
Click any image below to read more
“What I enjoy about Pedaling for Parkinson’s is the feeling of community seeing everyone's love for cycling and their commitment to raise awareness and funds for the Parkinson Canada Research Program.”
Lanny Thomas
Pedaling for Parkinson’s rider from Peterborough
Drumming to His Own Beat
How Larry Linton found peace with Parkinson’s.
Meet Larry Linton: drummer, marathon-runner, author, husband, dad, lawyer, and chair of the newly formed Parkinson Advisory Council (PAC). The council is an exciting new initiative launched by Parkinson Canada in 2020.
Almost a decade after his Parkinson’s diagnosis in 2012, Larry never imagined he’d be so involved in the Canadian Parkinson’s community.
“At the start of my Parkinson’s journey, I was a mess. I lived my life on the couch, away from my family. In my office, I buried myself in file work and declined team events and client meetings. Convinced that my life was over at 49, I often struggled to make it through the day.”
One day, tired of the couch, Larry made some choices that would change his future. He pulled on his running shoes. He picked up his drumsticks. He started writing. And he reached out to Parkinson Canada. In the days since, Larry has run three marathons. He played the drums at the Beaches Jazz Festival in Toronto. He published his first book (Shaken, Not Stirred: Living With Parkinson’s Disease came out a year ago). And he’s found connection, friendship and support with those travelling a similar Parkinson’s path.
“I wish I had reached out to Parkinson Canada sooner than I did. It took me years to attend my first support group meeting. At support groups, I felt that I belonged, hearing from others and finding comfort in sharing my own experiences. I came to appreciate that living with Parkinson’s is a community event. And that there is comfort in numbers.”
“The formation of the Parkinson Advisory Council puts the voice of the community at the table with Parkinson Canada. It gives us the opportunity to be active participants and advisors, ensuring that all actions taken by Parkinson Canada are done with the lens focussed on us and our care partners, all the time.”
Larry Linton
Chair of the Parkinson Advisory Council
From Tears to Laughter to Acceptance
Coming to terms with Parkinson’s.
Almost a decade after his Parkinson’s diagnosis, what advice would Larry share with his younger self?
“With the benefit of hindsight, there are a number of things I would have done differently.
Instead of putting on a brave face, I would have given myself permission to grieve, to be angry, to shout, to question, to cry and to eventually get to that point of acceptance.
I would have given myself permission to laugh and experience some bright moments.
Facing the Future with Hope and Resilience
Canada has the highest prevalence of Parkinson’s, per capita, in the world, increasing at a rate of 43%. In the next ten years, the number of Canadians diagnosed with Parkinson’s is predicted to double to more than 50 a day. With your determined support, Parkinson Canada is working to change this.
Our 2021-23 Strategic Plan focuses on navigating through this time of uncertainty while expanding our reach to impact more Canadians affected by Parkinson’s. Central to our vision is ensuring that anyone, anywhere affected by Parkinson’s can live well today, while we drive support and efforts towards finding a cure.
For the 100,000 loved ones with Parkinson’s in Canada today; for the 25 people who will be diagnosed tomorrow; for the countless numbers who will be diagnosed next year and the year after that: we’re working relentlessly to turn the tide.
Facing the Future: Research Innovation
Research holds the key to unravelling every Parkinson’s mystery. Last year, Parkinson Canada partnered with Brain Canada and the leading Parkinson’s disease researchers in the country to found the Canadian Open Parkinson Network (C-OPN). This network aims to accelerate breakthroughs, improve patient outcomes, increase clinical trial involvement, and transform the lives of people living with Parkinson’s.
YOU Can Change the Future
Join the Canadian Open Network with Canadians like Linda Bérard.
In the summer of 2013, just 44 years old, Linda Berard received the diagnosis that would change her life: Parkinson’s disease.
“...this diagnosis was tragic for me,” says Linda. “However, I have come a long way and am far more knowledgeable today about Parkinson’s. I now focus on helping others understand this disease.”
One way she’s doing that is with the Canadian Open Parkinson Network (C-OPN).
“I registered without hesitation,” Linda says. “As parents, and now proud grandparents, our greatest wish is to win the fight against this chronic and degenerative disease, so that generations following us will speak about Parkinson’s as a curable disease.”
Be part of making Parkinson’s a curable disease too. Find out more about C-OPN at www.copn-rpco.com
Facing the Future: Expanding Our Reach
Parkinson Canada’s 2021-2023 strategic plan puts people with Parkinson’s at the centre of everything we do—always. With your generous support and solidarity, we’re working hard to diversify our programs, expand our reach and serve the unique needs of Canadians with Parkinson’s wherever they live.
Reaching Out, No Matter What
Expanding our reach also includes offering webinars and online workshops that inspire, provide comfort or spark hope. Perhaps they’ll connect you with each other. Maybe they’ll fill you in on new research breakthroughs or therapies. Possibly they’ll make you laugh. From lived experience to medical expertise, we hope they remind you that you’re part of a community. And you’re never alone.
No Matter What
We launched our 2021-2023 “No Matter What” strategic plan in January by sharing your stories of determination and resilience. No Matter What: the phrase encompasses the spirit and determination of the 100,000 people in Canada living with Parkinson’s today. It represents a commitment to helping people with Parkinson’s overcome every obstacle they face. These three words will drive our actions, always, until we find a cure.
We’re committed to giving you space to tell your stories and share your needs so that, together, we can improve access to care and create systemic change across the country. To that end, we’re shaping an advocacy framework focused on access to health services and mobilizing the community to raise its collective voice.
Facing the Future: Raising Your Voice
Parkinson Advisory Council
The Parkinson Advisory Council (PAC), created in 2020 and populated by people across the Parkinson’s community, provides guidance and insight to the CEO - and Parkinson Canada as a whole - to ensure programs, service delivery and policy are improved through their firsthand knowledge and experience. PAC’s mission is: to ensure the voice of people affected by Parkinson’s disease - including caregivers - is integrated.
Demanding Better Access to Care
You’ve told us that diagnosis wait times and accessing multidisciplinary care are your highest priorities. We’re listening, we’re taking action and we’re advocating for change. From ongoing roundtables with key stakeholders (including, most importantly, people like you), we’re creating real solutions that we’ll take to policy-makers to demand change. We’ll keep speaking out until everyone can access the care they need when they need it.
Linda Berard and her husband
“I am a person still. I’ve got all the hopes and fears of anybody that I used to have before. But I’ve got Parkinson’s now. So I’ve just got to try to figure it out.”
Julie Wood
Living with Parkinson’s
2020 Numbers and Financial Reports
Thank You For Being There
As Parkinson Canada Vice Chair and Treasurer, I’ll admit I was deeply worried when COVID-19 hit. How could Parkinson Canada possibly continue to provide the same level of care, support, and advocacy amid the onslaught of challenges we were suddenly facing? How would we meet the financial goals that would help us continue to be there for Canadians with Parkinson’s?
Very quickly, you proved there was no need to fear. You stepped up. You donated. You participated. You spoke out. You shared your time and your expertise, committing to making life better for Canadians affected by Parkinson’s. You signed up for research trials. You were there whenever we asked you to be, so we could continue to be there for everyone who needed us, no matter what.
For eight years, I saw my own grandfather struggle with Parkinson’s. I know how important community is when you’re living the daily reality of Parkinson’s. Thank you for being a community who’s in it for and with each other, in good times and bad, no matter what.
With sincere gratitude,
Veeral Khatri
Parkinson Canada Vice Chair and Treasurer
Parkinson Canada Use of Resources
Parkinson Canada Source of Revenue
Click chart below to read more
Education & Services
Research
Community Services
Advocacy
Fundraising
Operation & Administration
Governance
$ 2,285,748
$ 1,603,320
$ 323,973
$ 245,027
$ 2,858,005
$ 1,947,370
$ 233,198
Individual Giving
Planned Giving
Events
Corporate & Foundation Donations
Investment Income
Other Revenue
$ 4,100,023
$ 989,058
$ 1,927,535
$ 1,173,694
$ 513,778
$ 1,107,958
Statement of Financial Position as at December 31
Assets
Current
Cash
Short-term investments
Accounts receivable
Prepaid expenses and other assets
Investments
Property and equipment
Total assets
Liabilities
Current
Accounts payable and accrued liabilities
Deferred revenue
Long-term
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
2020
$ 418,046
3,133,416
709,134
253,884
4,514,480
7,477,892
672,715
$ 12,665,087
$ 394,021
233,914
$ 627,935
400,115
$ 1,028,050
4,493,004
5,056,318
498,000
687,000
672,715
230,000
$ 11,637,037
$ 12,665,087
2019
$ 502,831
3,613,396
765,682
265,508
5,147,417
6,972,294
756,333
$ 12,876,044
$ 856,400
261,522
$ 1,117,922
436,490
$ 1,554,412
3,783,981
5,056,318
830,000
665,000
756,333
230,000
$ 11,321,632
$ 12,876,044
Income Statement
For the Twelve Months Ending December 31
Revenue
Individual giving
Planned giving
Events
Corporate and foundation donations
Investment income
Other
Expenses
Research, advocacy, education
& support services
Fundraising
Operating and administration
Excess of revenue over expenses
2020
$ 4,100,023
989,058
1,927,535
1,173,694
513,778
1,107,958
$ 9,812,046
4,458,068
2,858,005
2,180,568
$ 9,496,641
$ 315,405
2019
$ 4,617,226
2,874,920
2,682,346
265,508
5,147,417
260,966
$ 12,695,880
5,615,549
3,150,782
2,190,224
$ 10,956,555
$ 1,739,325
Meet the 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. We acknowledge the leadership and contributions of our Officers and Directors.
Visit Parkinson.ca to read more about our Board of Directors.
Officers
Marlin Stangeland
Chair
Veeral Khatri
Vice Chair and Treasurer
Karen Lee, PhD
Secretary
Directors
Joseph Bartlett
Director
Julie Cafley
Director
Laura Edgar
Director
Daphne FitzGerald
Director
Margaret Hanlon-Bell
Director
Dr. Wendy Horbay
Director
Nancy MacCready-Williams
Director
Sprague Plato
Director
Judi Richardson
Director and Past Chair
Michael Rothe
Director
Dr. Antonio P. Strafella
Director
Mike Zegers
Director
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...no matter what.
“You don’t know how much your generosity means. You help us hold each other up. And you give us hope by supporting research. I think we’re close to a breakthrough and the funds you provide will help us get there."
Greg McGinnis
Living with Parkinson's
