Parkinson Canada is excited to be a part of the World Parkinson’s Congress (WPC), a global event that brings together scientists, healthcare professionals, advocates and people living with Parkinson’s.
As we continue to build connections and network with the global Parkinson’s community, we will share learnings about improved treatments, ongoing research efforts and models of care.
Follow this blog to stay up to date with the speakers at WPC, as well as hear from our CEO and team members on what this means for the Parkinson’s community across Canada:
Celebrating Unity: Opening Day at WPC
Opening Day! Parkinson Canada at WPC 2023 – Karen Lee (PC), Bob Kuhn (PAC chair) and Renae Kuhn
The World Parkinson Congress (WPC) kicked off on Tuesday, July 4, 2023, with an inspiring and inclusive opening ceremony that set the tone for an extraordinary gathering of individuals from around the world. Speakers shared their stories and insights, fostering a sense of community and understanding, including people living with Parkinson’s.
Parkinson’s is a disease that knows no boundaries, impacting individuals from different backgrounds and cultures worldwide. The opening ceremony highlighted the universality of this, emphasizing the need for collective efforts in finding solutions and supporting those affected by Parkinson’s.
Parkinson’s impact on families was captured in a video showcased at the opening. The winning video, “Slim Shaky,” was created by a son and care partner who illustrated his mother’s Parkinson’s journey. The video touched upon the challenges they faced. It served as a testament to the strength and resilience of individuals affected by Parkinson’s. You can view the video here:
As the WPC continues, participants are united in their dedication to advancing Parkinson’s research, treatment and care. The diverse speakers and stories shared during the opening ceremony set the stage for collaboration, learning and empowerment, making it an exciting event to be a part of.
Stay tuned for more Parkinson Canada updates at the World Parkinson Congress by following #wpc2023 and our social media channels: Twitter, Instagram, LinkedIn, Facebook
Daily Reflections from WPC from Dr. Karen Lee, Parkinson Canada CEO:
The last few days in Barcelona have been a whirlwind of inspiration, collaboration, seeing familiar faces and meeting new friends. This is the first conference I have attended that includes individuals with lived experience, and it is truly amazing to see the international Parkinson’s community together in one space. Meeting leads of Parkinson’s organizations was an amazing opportunity to learn what is happening worldwide. One of the themes of these discussions was stigma. Regardless of where you live in the world, the stigma of living with Parkinson’s impacts everyone. There is self-stigma – acceptance of the disease – and the importance of increased awareness of the disease among the public. We talked about how we as health charities can support this on a global scale, how we can take advantage of world Parkinson Day and the month of April, and most importantly, how we can ensure that people with lived experience have platforms to share their stories so we can all gain the knowledge and understanding of Parkinson’s Disease to reduce stigma.
To learn more about Stigma visit: https://www.parkinson.ca/about-parkinsons/stigma/
From Bryce Perry, Information and Referral Manager:
The 2023 World Parkinson Congress in Barcelona, Spain, kicked off tonight with energetic, musical performances by the WPC choir and a powerful saxophone number from Thomas Gisby to an inspiring keynote speech from Connie Carpentar-week’s events. To top off the night, there was a surprise video welcome from Sir Paul McCartney and his connection to Parkinson Disease through his childhood friend’s diagnosis. It was great to meet so many fellow Canadians and make new connections. And that was just day one! Can’t wait for the rest of the week! Below I catch up with a fellow Canadian and we chatted about travel tips with taking medication. Kudos to all the people with Parkinson’s who have made the journey to be here!
Exploring New Horizons in Parkinson’s Research: WPC Day Two
Day two of the World Parkinson’s Congress is off to an exhilarating start, bringing together over 2,600 attendees. The second day of the congress continued to shed light on groundbreaking research and emerging therapies, providing hope and inspiration to the Parkinson community worldwide.
In celebrating connections, Canada Night hosted by Parkinson Canada provided a special opportunity for Canadian delegates at the conference to connect and forge meaningful relationships. Approximately 150 attendees from across the country seized this occasion to showcase the dedication and commitment of the Parkinson Canada community.
The emerging therapies session featured two esteemed Canadian speakers, Dr. Susan Fox and Dr. Lorraine Kalia, from the University Health Network (UHN) in Toronto. Both speakers are members of Parkinson Canada’s research committees.
The session encompassed a wide range of therapeutic targets, from genetics to immune factors associated with Parkinson’s. Researchers highlighted several promising therapeutic targets that have shown potential in the treatment of Parkinson’s. Notably, a theme throughout the discussions was the increasing focus on drug repurposing in different research domains. This approach harnesses the potential of existing drugs already being used for other medical conditions, driving progress and efficiency in treatment development.
Another area of discussion revolved around “gut health.” With the potential of probiotics and antibiotics to address gut inflammation in Parkinson’s, the gut-brain connection has garnered significant attention in recent years.
In other sessions, researchers broached the subject of Parkinson’s subtypes with the aim of creating classifications that reflect the unique characteristics and mechanisms associated with PD. This field is currently garnering significant attention as subtypes may allow researchers to develop more targeted and personalized treatments in the future.
Dr. Jonny Acheson, a patient advocate from the UK, shared his perspective on Parkinson’s through an analogy featuring Gaudi and the Sagrada di Famiglia. Dr. Acheson emphasized the importance of patient involvement in research and the role of each person with Parkinson’s plays.
The second day of the World Parkinson’s Congress was filled with hope, collaboration, and groundbreaking research. As the congress progresses, we anticipate more learnings about therapies and other information to empower people to live well with Parkinson’s. Stay tuned for more Parkinson Canada updates at the World Parkinson Congress by following #wpc2023 and our social media channels: Twitter, Instagram, LinkedIn, Facebook
Daily Reflections from WPC from Angelica Asis, Vice President, Research at Parkinson Canada:
When I heard about the World Parkinson Congress, I immediately thought about all of the great research I would learn about and the amazing research leaders from around the world I would meet and form connections with. After only a few days, I witnessed an inspiring movement driven by the international Parkinson’s community. A movement towards embracing life with Parkinson’s, displaying creativity and joy through art, dance, song, and movement, forming lifelong bonds with people from all backgrounds, and harnessing the voice of the person with Parkinson’s in research. In a short time, I met so many new friends, learned about the unique experiences and journeys each individual with Parkinson’s and their families, and the incredible resilience, positivity and persistence to thrive displayed by the community. It has been a truly eye-opening experience seeing members of the patient community take part in research discussions, ask questions after the presentations, and share their perspectives on why the research matters to them. It was great to see so much collaboration, between people with Parkinson’s and researchers, and between organizations like Parkinson Canada that serve and support people with Parkinson’s. One example is the Clinical Research Village, a series of resources and talks focused on incorporating the patient voice in the design and implementation of clinical research studies, and the development of a WPC Clinical Research Toolkit which was a combined effort of 8 patient organizations from around the world including Parkinson Canada.
From Bryce Perry, Information and Referral Manager:
We ended the day with the Canadian Night, in which Parkinson Canada welcomed over 140 WPC Canadian delegates to meet, get to know each other, share ideas, and form new relationships. The energy in the room was amazing. Attendees heard from stakeholders on the impact and work of Parkinson Canada, and I was quickly approached by several researchers and trainees after the program who shared the importance of our funding in advancing their studies. I was able to put faces to names and get to know the Canadian research community and what drives their work. Through these engagements and interactions, I learned not only about research but about the tenacity of people with Parkinson’s and their ability to thrive through their Parkinson’s journey. I am hopeful that we can accomplish so much with the support from such a strong and dedicated community.
Canada Night: Representation at WPC
Canada has made significant contributions to Parkinson’s research and has actively engaged in collaborations with international experts, including participation at events like the World Parkinson Congress or WPC.
In the spirit of forging connections, Parkinson Canada hosted Canada Night at WPC. It was a special evening that welcomed approximately 150 attendees from across the country to reunite with old friends, meet new faces, and highlight the dedication and efforts of the Canadian Parkinson’s community.
Program highlights included a panel discussion moderated by Angelica Asis, Parkinson Canada’s Vice President of Research. The panel featured Dr. Lorraine Kal, who oversees knowledge translation for the Canadian Open Parkinson Network (C-OPN), as well as Dianne Bramble, a patient advocate and active participant in C-OPN. The discussion centered around Parkinson Canada’s pivotal role in uniting the research and patient communities to drive discovery and ensure that research has a meaningful impact on individuals affected by Parkinson’s. The panel also emphasized the crucial role of funding in sustaining the motivation and support for Canada’s esteemed researchers and trainees.
Following the research panel, Bryce Perry, Information and Referral Manager, had the opportunity to lead a panel discussion with Steve Iseman and Jim Redmon of the Spinning Wheels Bike Tour. They talked about what motivated them to travel across Canada to raise funds for Parkinson’s Disease research and programs, and that the only thing they would do differently is to “do more” and make the event bigger and better. What was most striking was their comment that, “people with Parkinson’s want to be found”, and that cycling gave them a renewed purpose and passion.
Bryce also connected with Larry Gifford, host of the “Life Gives You Parkinson’s” podcast and co-founder of PD Avengers. Larry expressed his admiration for the diverse representation at the event, including patients, care partners, physicians, researchers, counsellors, and home healthcare workers. Canada Night fostered open conversations, connections and shared experiences, creating a sense of belonging and support. Larry has played an immense role in the WPC program, where he led various sessions throughout the week.
Watch the interview here with Bryce Perry and Larry Gifford:
For more updates from Parkinson Canada at the World Parkinson Congress follow #wpc2023 and our social media channels.
Together, we can make a difference!
Revolutionizing Parkinson’s Care: WPC Day Three
Dr. Bas Bloem from Radboud University Medical Center in Nijmegen, Netherlands.
Day three at the 2023 World Parkinson Congress brought exciting insights into the role of digital tools in monitoring Parkinson’s. Dr. Bas Bloem from Radboud University Medical Center in Nijmegen, Netherlands, presented on the transformative potential of digital tools in the management of Parkinson’s.
Dr. Bloem highlighted a fundamental difference between standard clinical assessments and digital tracking. While clinical assessments provide a snapshot of a patient’s condition at a specific moment, digital tracking enables continuous monitoring often without a visit to a doctor’s office. This continuous monitoring is crucial because Parkinson’s symptoms fluctuate throughout the day, varying based on factors such as the time of day and the duration of medication effects. By utilizing digital tools for monitoring, healthcare providers can proactively identify and address issues (such as near falls) before they escalate.
One notable development discussed was the integration of digital outcomes in clinical trials. Dr. Bloem cited the PASENDA study for the therapy prasinezumab conducted by Roche, which demonstrated how incorporating digital tools to measure the effects of therapeutic treatments can provide researchers with more detailed insights into the potential benefits of new therapies. The use of digital tracking for pharmaceutical trials is a growing trend and we hope it leads to better trial outcomes.
Dr. Bloem expressed his vision of implementing digital tools that capture various metrics related to a person’s health state. His ultimate goal is to empower people with Parkinson’s to stay at home and enjoy daily life when all symptoms are in the “green light” zone. Notifications for concerning symptoms would enable timely interventions through scheduled meetings. This would not only improve the quality of life for patients but also reduce the patient volume in clinics. In instances where digital tracking tools indicate concerning symptoms (represented by “yellow” or “red” lights), both the patient and the healthcare provider would be notified. Enabling timely intervention, allowing for scheduled meetings to address emerging issues.
As the field continues to advance, we can look forward to a future where digital tools play a pivotal role in enhancing the lives of individuals living with Parkinson’s.
For more Parkinson Canada updates at the World Parkinson Congress follow #wpc2023 and our social media channels: Twitter, Instagram, LinkedIn, Facebook
Daily Reflections from WPC:
Dr. Kye Won Park, MDS and Postdoctoral fellow at UBC
My research topic is about artificial intelligence (AI) assisted remote monitoring of Parkinson’s Disease. I could sense a surprisingly growing interest in the field at WPC2023 from academia, industry, and even patients. It was a truly motivating and exciting moments! Parkinson Canada was very supportive and keen for Canadian participants throughout the congress. I also want to thank Parkinson Canada for supporting my work greatly by bridging the research team with the patients through C-OPN.
Bob Kuhn, Chair of the Parkinson Advisory Council
WPC 2023 is my 4th congress. It is a unique congregation of those who make up the Parkinson’s disease community. Normally, it is every three years in a different location. It attracts a stunningly diverse crowd of individuals, from dozens of countries representing the elite of the medical, scientific and academic movement disorder field. But it is balanced by newly diagnosed activists, volunteers and neophytes anxious to learn about, contribute to and participate in the search for the cause, control and cure of this incredibly frustrating disease.
I am privileged to be part of this multifaceted global gathering, but I must admit it can easily dissolve into sensory overload. But it is not just a selection of cerebral academics presenting their latest attempts, successes and failures. I feel completely at home here despite having little to no understanding of the ethereal world of science with its eight-syllable words.
There is a recognition by attendees that to defeat this debilitating dragon of a disease, we must build strong alliances. People living with Parkinson’s, each of us longing for our personal mystery to be solved, need dedicated medical clinicians and related expertise. In turn, they need specialized scientists, pharmaceutical experts, and researchers who depend on the generosity and organized support of those willing to provide funding. Every WPC event recognizes this reality as it draws us together. We only arrived earlier this week, but I have spent hours with many of them, sharing our PD progress.
There is little room for pity. But there is a huge appetite for the incubation of new ideas and a sense of hope rises with the volume of voices.
This is the best WPC yet. With only one more full day left I expect to leave exhausted but buoyed by the discussions and plans we shared. I am more confident than ever that a cure will be found, and we will celebrate the achievements of the WPC.
Research driven by your support: WPC Wrap-Up Day Four
Support group workshop with leaders from around the world- US, Nigeria, and Canada all represented and sharing ideas for how to better support our communities.
Research is propelled forward by the commitment of people with Parkinson’s, dedicated care partners, and the invaluable support of individuals like you. This year brought one of the most exciting breakthroughs in Parkinson’s research in recent memory: the validation of the seeding assay test for diagnosing PD. The progress in seeding assays is a testament to the dedicated participation of people with Parkinson’s and their care partners. Over 1000 participants contributed to the validation paper released this year, willingly undergoing lumbar punctures to help advance the understanding and better the world for people with Parkinson’s.
During the congress, we had the privilege of hearing from Canadian patient advocate Dr. Soania Mathur, also known as UnshakeableMD. She highlighted the importance of having the right measures of treatment effect, as well as the need for tailored participant pools, to ensure drugs being tested in clinical trials have the best chance for success. When research accounts for the complexity of Parkinson’s it leads us closer to a disease-modiyfing therapy and personalized disease care.
This conference showcased the breakthroughs in biomarkers earlier this year and demonstrated that there is still much to be hopeful and inspired about, including emerging therapies and digital symptom tracking. Our team here at Parkinson Canada, and partners like you, recognize it’s essential to continue connecting and collaborating with our international peers.
We extend our gratitude to all of you for following our updates from Parkinson Canada at the World Parkinson Congress. Your support and generosity as donors enable us to bring you this exciting coverage and work tirelessly toward finding a cure.
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Daily Reflections from WPC
Jacquie Micallef, Parkinson Canada, VP Community Engagement
The congress was truly remarkable, filled with thought-provoking sessions and discussions. The Support Group Leader Lounge explored strategies to engage diverse individuals in support groups. I was thrilled to share our partnership with the Davis Phinney Foundation, which has enabled us to enhance our support group curriculum and resources using the valuable content from Every Victory Counts.
It was encouraging to see representatives from other Parkinson’s organizations expressing interest in similar collaborations, highlighting the potential for collective growth and impact.
I had the privilege of collaborating with Kieran Connolly from Parkinson’s Association Ireland, focusing on the specific needs of women with Parkinson’s. We emphasized the importance of helping women find the necessary care teams and support systems, considering the significant caregiving roles many of them assume within their families.
Attending the AbbVie-sponsored symposium, “All for One Goal: A Person-centred Approach to Addressing the Challenge of Advancing Parkinson’s Disease,” was enlightening. I resonated with Dr. Bastiaan Bloem’s insights on patient-centered care. The dimensions he highlighted, including coordinated care, emotional support, family involvement, and equitable access to care, reinforced our commitment to providing comprehensive support and personalized care for individuals with Parkinson’s and their families.
During the scientific program, session focused on “Proactivity across the Parkinson’s Disease Continuum,” the importance of pre-habilitation, exercise, and strategies for managing hospital care were strongly emphasized. I found it compelling to learn about the significant positive effects of exercise on motor symptoms and overall quality of life for individuals with Parkinson’s.
Particularly noteworthy were the insights regarding the impact of strength training for breathing muscles, which can help prevent complications such as pneumonia. These findings underscored the value of adopting a comprehensive approach to care that encompasses exercise and targeted interventions throughout the Parkinson’s journey.
Overall, this conference has been an exceptional experience. I am inspired by the collective efforts of researchers, healthcare professionals, and advocates in the Parkinson’s community. Together, we can continue making significant strides in research, support, and advocacy, working towards a brighter future.
Naseem Jamal, Parkinson Canada, Associate Director, Philanthropy
After attending a comprehensive day-long course on the future of Parkinson’s research and treatment, I felt truly inspired! The focus was on the exciting developments in infusion therapies and deep brain stimulation (DBS) advancements, bringing continued hope for people living with Parkinson’s not just to manage but thrive.
Parkinson’s is a complex condition characterized by both motor and non-motor complications, some of which are linked to long-term treatment with levodopa. These complications can be debilitating and significantly impact an individual’s quality of life. The motor complications that often arise from chronic levodopa therapy include early morning OFFs, wearing off, delayed ON, ON-OFF phenomenon, dose failures, and dyskinesias.
If you have Parkinson’s and are experiencing motor complications, it is advisable to consult with your neurologist and inquire about advanced therapies. During the session, the presenters introduced a useful screening tool called the 5-2-1 criteria. These criteria help identify individuals who may benefit from advancing therapies like infusion pumps and DBS. It identifies individuals who meet one or more of the following conditions:
1. Take five or more doses of oral levodopa per day.
2. Experiencing ‘off’ symptoms for at least two hours during the waking day.
3. Having troublesome dyskinesia for one or more hours during the waking day.
By identifying those who meet these criteria, individuals and their healthcare teams can explore the potential benefits and suitability of advanced therapies, opening new possibilities for managing motor complications and improving the overall quality of life.