Accredited through Imagine Canada, Parkinson Canada puts people living with Parkinson’s at the centre of everything we do. We empower the Parkinson’s community through tailored programs and services, innovative research and advocacy that raises the voice of Canadians impacted by Parkinson’s.
The work we are embarking on in support of our Strategic Plan for 2021–23 demonstrates our commitment to supporting more Canadians on their Parkinson’s journey, raising the voice of people living with Parkinson’s to improve healthcare outcomes and collaborating to drive research innovation that changes lives – all while ensuring we help those impacted by Parkinson’s to live well.
Explore our 2021 impact report
Programs and services
We reach Canadians impacted by Parkinson’s by connecting them to credible evidence-based information and community programs and services that support each individual person’s journey. Thanks to the support of our donors, our trusted information and referral resources and services are available to support Canadians, free of charge, in English and French.
Webinars
Parkinson Canada provides ongoing educational webinars with topics of interest to Canadians impacted by Parkinson’s. These accessible video and audio resources cover topics related to mental, emotional, spiritual, and physical well-being.
- In 2021, we hosted 8 webinars with 14,096 viewers.
- In 2022, we’re aiming to host 10 webinars with 17,500 viewers.
Support groups
Parkinson Canada has a vast network (145 in 2022) of support groups across Canada for people living with Parkinson’s, care partners and family members. Support groups are an important channel for community support for people with Parkinson’s as well as care partners We host support groups, both in-person and virtual, to provide mutual support from other people living with Parkinson’s disease. Support groups offer a safe environment for talking about experiences, enhancing people’s ability to cope with the daily challenges of Parkinson’s.
Some groups are subject-specific (e.g., young onset, newly diagnosed, language-based, and care partners as examples) while others are more general or may be based off region or demographic. Support groups are an excellent place for members to learn and gather information, resources, and strategies for living with Parkinson’s and caring for someone with Parkinson’s from the trained volunteer facilitators and each other.
- In 2021, we had a network of 137 support groups with 7,291 participants.
- In 2022, we’re aiming to host a network of 145 support groups with 8,800 participants.
Information and referral
The Parkinson Canada Information and Referral Helpline is a bilingual, toll-free Canada-wide number for people living with Parkinson’s, their caregivers and health care professionals to connect to programs and services across the country. We provide help by phone or email, Monday to Friday, 9:00 a.m. – 5:00 p.m. ET. Email information.referral@parkinson.ca or call 1 (800) 565-3000.
- In 2021, we received 1,896 emails and 2,200 phone calls.
- In 2022, we expect to receive 2,400 emails and 2,700 phone calls.
Additional resources
Parkinson Canada provides additional resources throughout the year that can include articles and publications, exercise and wellness resources, podcasts, COVID-resources, information on hot topics, and targeted publications such as Every Victory Counts.
- In 2021, we oversaw the creation of an online medication tracker and saw 5,041 total resource downloads.
- So far in 2022, we’ve launched the Canadian Edition of Every Victory Counts and expect to see 6,000 resource downloads.
New + upcoming programs and services
Every Victory Counts
Parkinson Canada has partnered with the Davis Phinney Foundation to publish their latest edition of The Every Victory Counts® manual for Canadians affected by Parkinson’s. Our edition transforms the book with Canadian-specific statistics, references to medications approved by Health Canada, information on long-term care, legal and financial planning as it pertains to Canadians, and more.
CareFinder
We are building a digital database of Parkinson’s service providers across Canada to help people with Parkinson’s, their care partners, and medical professionals locate credible community resources to support the management of Parkinson’s.
1:1 peer support program
Our nationwide peer-to-peer support program provides mentoring and support to people affected by Parkinson’s disease. Applicants to the program are matched with skilled volunteers who have experience living with Parkinson’s disease or acting as a care partner for someone with Parkinson’s. Volunteers can share their experiences and provide invaluable perspective and support for living with or caring for someone with Parkinson’s.
Research
Since 1981, Parkinson Canada has funded innovative research including discovery-stage science, fellowships for Movement Disorder Specialists and training for the next generation of Parkinson’s research leaders. Thanks to the generosity of its donors, Parkinson Canada:
- Provides the only grant in Canada for MDS fellowships that allows more doctors to take advantage of the specialized training required to help Canadians with Parkinson’s live well.
- 26 MDS Fellowships awarded from 2002-2022.
- 13 MDS Fellowships awarded worth $850,000 from 2013-2022.
- Funds critical research determining optimal exercises to slow the progression of Parkinson’s.
- Funded early-stage research that led to the development of Deep Brain Stimulation (DBS). Today, DBSis widely recognized as a viable treatment option for some people living with Parkinson’s.
- In 2020, 4 studies involving DBS were selected for funding culminating in $275,000.00.
- In 2022, 2 studies involving DBS were selected for funding culminating in $175,000.00.
Since 1981, the Parkinson Canada National Research Program has invested more than $31 million in funding for over 600 awards, fellowships and grants that teach us more about diagnosing and treating Parkinson’s disease.
Research strategy
Parkinson Canada’s research program has been a pivotal contributor to the Canadian Parkinson’s research landscape through its support of innovative research. Parkinson Canada is expanding on its existing program with an upcoming research strategy. The research strategy seeks to emphasize targeted funding in key research areas, engage the patient community in the research pipeline, and foster the next generation of Parkinson’s researchers through researcher programming and mentorship.
Digital health application
Parkinson Canada is designing an app to support people with Parkinson’s in managing their disease through motivational coaching, education, and tracking. A grant competition was announced in late April 2022 to select a research group that we will fund to create a Parkinson Canada-sponsored health application.
Fellowships
Parkinson Canada offers three different fellowships for biomedical research and clinical training. The Basic Research Fellowship allows for postdoctoral fellows to conduct laboratory or field-based research projects. The Clinical Movement Disorders Fellowship and the Clinical Research Fellowship place emphasis on clinical training and direct experience in the diagnosis and treatment of Parkinson’s disease. Parkinson Canada’s clinical fellowships are the only established funding that exists to support Canadian neurologists interested in specializing in Movement Disorders. Our funding accelerates the pace of breakthrough research – without it, clinicians interested in pursuing such a fellowship must independently seek out financial supports to cover the costs of their training.
Innovation research project funding
Along with the fellowships offered, Parkinson Canada provides innovation research funding. We fund discovery stage research so investigators can test new theories and pursue promising research leads. We also provide funding to researchers at the beginning of their careers in order to foster the next generation of scientists studying Parkinson’s disease. This includes graduate level awards and awards for newly appointed professors.
New projects
The 2022-2024 research cycle has granted 23 projects across 8 different streams, totaling at $1,368,440.75 invested. These diverse projects in different streams allow for a multidimensional approach to advancing our understanding of Parkinson’s disease.
Partnerships & collaboration
Canadian Open Parkinson Network
The Canadian Open Parkinson Network (C-OPN) a joint project with Parkinson Canada and Brain Canada aimed at accelerating the understanding of Parkinson’s. C-OPN bridges people, data and resources to accelerate new discoveries in PD research. Specifically, it is a patient registry that contains demographic, questionnaire and biological data that can be accessed by national and international researchers/ C-OPN members. This network fosters collaborations and discoveries in Parkinson’s disease to enable possible new therapeutic interventions, preventative measures and/or further understanding of this complex disease.
Advocacy
We raise the voice of Canadians impacted by Parkinson’s to ensure government policies and programs are responsive to their needs.
Advocacy Roundtables Series
The Advocacy Roundtable Series consisted of a national session and eight regional roundtables that brought together more than 150 participants from the Parkinson’s community including people living with Parkinson’s, care partners, movement disorder specialists, allied health professionals, government officials, and six Parkinson’s community organizations. The three main challenges identified in the roundtables; wait times, access to care, and models of care, currently inform the ongoing advocacy strategy, to be finalized in the fall 2022 along with the release of the roundtable reports.
The roundtables’ key findings webinar was attended live by over 200 participants and the recording viewed on YouTube 318 times.
2021 Federal Election
The election campaign included a letter-writing initiative to candidates to raise awareness on Parkinson’s disease. The election page was viewed 1,251 unique times and the toolkit downloaded 60 times. A total of 155 stakeholders emailed their candidates, resulting in 467 emails across 96 ridings. The campaign was shared 57 times across Twitter, Facebook, and via email.
2022 Ontario Election 2022
The June 3, 2022 election campaign included a letter-writing initiative to candidates and elected officials and appointed ministers post-election, to raise awareness on Parkinson’s disease and the communities’ key priorities identified in the ON roundtable.
Pre-election
The election campaign page was viewed 1,479 unique times and the toolkit downloaded 95 times. A total of 156 stakeholders emailed their candidates, resulting in 479 emails across 74 ridings. The campaign was shared 58 times across Twitter, Facebook, and via email.
Post-election
A total of 26 stakeholders emailed their elected officials in 26 unique ridings. The campaign was shared seven times across Twitter and Facebook.
2022 Québec Election
The Québec election will be held on or before October 3, 2022. Stakeholders will be provided with an election toolkit and invited to participate in a letter writing campaign to their candidates pre-election, and to elected officials and ministers’ post-election, to raise awareness on Parkinson’s disease and the communities’ key priorities identified in the roundtable series.
Ambassador Network
The Ambassador Network is comprised of 32 highly engaged individuals across Canada who participate in provincial and national government relations and advocacy initiatives. In 2021, Ambassadors participated in the roundtables and federal election campaign. So far in 2022, Ambassadors have participated in the Ontario election campaign, contacted elected officials at the provincial and national levels 26 times, participated in six meetings with officials, and were successful in having three proclamations of April as Parkinson’s Awareness Month in the house of commons and the Ontario legislature.
Partnerships
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 living with Parkinson’s is integrated into our strategic initiatives by providing advice to our CEO and our team members in delivering our mission.
Research and Clinical Advisory Committee
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.
PD Avengers
The PD Avengers is a global alliance of people with Parkinson’s, partners and friends standing together demanding change in how the disease is seen and treated. They add urgency to research, wellness and advocacy by uniting people and organizations to the cause of ending Parkinson’s. Parkinson Canada is a member organization and contributes to the PD Avenger advocacy efforts as well as their pesticides working group.
World Parkinson Coalition
The World Parkinson Coalition® (WPC) helps advance understanding of Parkinson’s disease by creating the only totally inclusive international platform for the community to share knowledge and spark new research agendas across the Parkinson’s field. Parkinson Canada is involved in a number of WPC leadership working groups including efforts to address stigma around Parkinson’s, patient engagement in research, technology & Parkinson’s, and global equity.
The Davis Phinney Foundation
The Davis Phinney Foundation helps people live well with Parkinson’s TODAY through our resources, events, research, community, and more. Parkinson Canada has partnered with Davis Phinney to create the Canadian Edition of the Every Victory Counts® manual.
Fundraising events
SuperWalk
The SuperWalk is the largest annual fundraiser for Parkinson Canada, an important and ever-expanding resource for Canadians living with Parkinson’s disease and their care partners.
- In 2022, our goal is to welcome 1,700 walkers across 30+ in-person and virtual walks.
Pedaling for Parkinson’s
Founded by Canadians for Canadians, Pedaling for Parkinson’s invites cyclists to ride towards progress by funding research and raising awareness for Parkinson Canada.
- In 2022, our goal is to welcome 300 cyclists across 3 in-person and virtual rides.
Growling Beaver Brevet
Founded by cyclists for cyclists, the Growling Beaver Brevet invites participants to ride for wellness while fueling research and raising awareness for Parkinson Canada.
- In 2021, we welcomed 250 cyclists with 4 routes and a virtual ride.
- In 2022, we plan to welcome 250 cyclists with 4 routs and a virtual ride.
Volunteers
Volunteers are integral to our work at Parkinson Canada and we strive to provide a volunteer experience that is engaging and meaningful.
- In 2021, we worked with 500 volunteers across 33 events.
Where does your money go?
Thanks to the generosity of our donors and volunteers, in 2021, Parkinson Canada allocated more than $4.5 million to our mission across Canada. We invested more than $2.25 million in education and services, over $1.6 million in groundbreaking research, and more than $650,000 in community services and advocacy. No other national charity in Canada accomplishes so much for people touched by Parkinson’s. It takes money to fund these accomplishments.
We take great care and concern regarding every dollar that is donated to our organization. We are focused on managing our expenses. Last year, our fundraising costs represented 24% of our expenses, and our operating and administration expenses were 14%.
Our investment in fundraising allows us to attract long-term donors to our cause through revenue-generating events and direct mail fundraising, while our administration expenses ensure good organizational governance. We must have qualified senior staff who can provide responsible leadership for our staff and volunteers across the country. We also invest in demonstrating excellence in the five fundamental areas – board governance, financial accountability and transparency, fundraising, staff management, and volunteer involvement – that are required to be awarded accreditation by Imagine Canada’s Standards Program. We invest in trust.
The dedication and generosity of our donors and partners – combined with our responsible financial practices – resulted in exceptional revenue growth in 2021. We will continue to invest funds raised in Canada’s best Parkinson’s research, education and services, so that people with Parkinson’s can live well today – and tomorrow.