The PKD Foundation of Canada was proud to present the 3rd Annual Virtual PKD Summit on November 17, 2023. The PKD Summit is Canada’s leading patient-focused educational event in the field of polycystic kidney disease. The PKD Foundation of Canada's mission is to promote programs of research, advocacy, education, support, and awareness, in order to discover treatments and a cure for polycystic kidney disease, and improve the lives of all it affects.
Topics & Speakers
10:00 am - 10:30 am EST: Getting to know the PKD Foundation of Canada - Presented by Jeff Robertson
Jeff Robertson, Executive Director, walked us through the history of the PKD Foundation of Canada and highlighted past, present and future goals for the organization. During this presentation, Jeff also discussed the many ways the Foundation’s mission to promote programs of research, education, support, awareness and advocacy positively impact the national PKD community, and how you can get involved.
Jeff Robertson has been involved with the PKD Foundation of Canada for many years, beginning as a volunteer for his local chapter, and Walk Coordinator in Toronto. His life has been deeply impacted by polycystic kidney disease (PKD) – both his mother and grandmother were diagnosed with the disease when Jeff was young. As a result, he has always been passionate about the importance of self-advocacy, volunteerism and community involvement. Having seen the increase in national exposure that the PKD Foundation of Canada has received over the last 15 years, Jeff is confident that the Foundation will continue to achieve even greater success, and will continue to be a nation-leading support system for those affected by polycystic kidney disease.
10:30 am - 11:30 am EST: Pain Management & PKD - Presented by Dr. Mike Bevilacqua
Dr. Bevilacqua discussed the prevalence of pain in PKD patients over the course of the disease. He explained the different types of pain in PKD, giving suggestions about how to describe and monitor PKD pain, and suggested chronic pain management strategies and resources.
Dr. Micheli (Mike) Bevilacqua is a nephrologist with additional training in health administration. His clinical nephrology practice is based in Surrey, British Columbia, and he is involved in several administrative roles with BC Renal. He is the Chair of the Provincial Kidney Care Committee which coordinates care delivery for over 15,000 British Columbians living with chronic kidney disease, and the Medical Lead for the BC Polycystic Kidney Disease Network which aims to optimize management of PKD in BC and the Co-Chair of the Transplant First Committee aiming to improve access to living donor kidney transplantation.
11:30 am - 12:30 pm EST: The Importance of Nutrition & PKD - Presented by Emily Campbell, Registered Dietician
In recent years, the importance of nutrition with PKD has grown in popularity and knowledge. This presentation reviewed current recommendations for sustainable nutrition changes and health benefits to manage PKD, so that patients could appreciate the health benefits of nutrition changes for PKD, be able to identify sustainable nutrition changes, and understand the foods to include in a PKD-conscious diet.
Emily Campbell is a registered dietitian and certified diabetes educator with a Master of Science in Foods and Nutrition. Emily is the owner of Kidney Nutrition, where she supports those living with kidney disease all over Canada through group and one-on-one nutrition support. Additionally, she works at St. Michael’s Hospital in Toronto, Ontario, in the Renal Transplant Program and Kidney Stone Prevention Program. Emily is the co-chair of the Southern Ontario Canadian Association of Nephrology Dietitians, and a two-time cookbook author for those living with chronic kidney disease. Emily is passionate about helping others digest the complex world of renal nutrition, and supporting others in achieving their health and nutrition goals.
12:30 pm - 1:00 pm EST: Health Break Cooking Demo - Presented by Emily Campbell, Registered Dietician
Recipe: Kale and Chickpea Caesar Salad
This delicious Kale and Chickpea Caesar Salad was made with a homemade Caesar dressing, and topped with garlic chickpeas for a kidney-friendly salad that could be a lunchtime favourite.
Progress in the Care of Patients with Polycystic Kidney Disease - Presented by Dr. Matt Lanktree
Dr. Lanktree discussed how genetics beyond PKD1 and PKD2 impact ADPKD, offered suggestions for how to slow cyst growth, and shared what he sees coming next in the treatment of PKD.
Dr. Lanktree is a clinician-scientist, assistant professor, and medical director of the McMaster Kidney Genetics Clinic, caring for patients with chronic and end-stage kidney disease at St. Joseph's Healthcare Hamilton and McMaster University. Dr. Lanktree has published extensively on genetics and kidney disease, including polycystic kidney disease, and has received peer review funding from the Canadian Institutes of Health Research, the Canadian and American Societies of Nephrology, and was recently awarded the Canadian Society of Nephrology New Investigator Award. Matt has set his goal to use genetics to improve the care of patients with kidney disease.
2:00 pm - 3:00 pm EST: Basics of Clinical Care for Children with ADPKD & ARPKD - Presented by Dr. Lisa Guay-Woodford
Dr. Guay-Woodford presented the basics of both ARPKD and ADPKD in children, autosomal recessive polycystic kidney disease management, and current ARPKD research and clinical trials.
Dr. Guay-Woodford is an internationally recognized pediatric nephrologist whose work focuses on identifying clinical and genetic factors involved in the pathogenesis of inherited renal disorders, most notably autosomal recessive polycystic kidney disease (ARPKD). Her laboratory participated in the identification of the human ARPKD gene as part of an international consortium, and her group was the first to identify a candidate modifier gene for ARPKD. She has directed the NIDDK-funded Hepato-Renal Fibrocystic Disease Research and Translational Core Center, initially established when she was at the University of Alabama at Birmingham (UAB), and she continues to serve as co-Director of the UAB Childhood Cystic Kidney Disease Core Center. Her research program has been funded by the NIH, the Burroughs Wellcome Fund Clinical Scientist Award in Translational Research, and the Polycystic Kidney Disease Foundation. In 2009, Dr. Guay-Woodford was awarded the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease, given by the PKD Foundation and the International Society of Nephrology.
Dr. Guay-Woodford has recently assumed the role of Senior Advisor for Clinical and Translational Research Initiatives and Director of the Inherited Kidney Diseases Program at the Children’s Hospital of Philadelphia (CHOP). She holds the Presidential Scholar Endowed Chair for Clinical and Translational Science and serves as Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania.
3:00 pm - 3:55 pm EST: Being Your Own Best Advocate - Presented by Ciara Morin
Ciara presented 'Being Your Own Best Advocate,' focusing on the importance of finding your voice as a patient, advocating for yourself and loved ones, and effecting positive change in your PKD journey. Learning to be a strong advocate is a skill that will serve you well for a lifetime, and as a patient herself, Ciara enjoys sharing her perspective on how to do this. Ciara dove into how you can turn your truth into a helpful narrative, so that you can receive the best possible support & care - while feeling more in-control of the process. Additionally, she helped viewers understand what might be preventing them from advocating effectively, so they could learn how to do so with greater ease. This presentation was meant to help you to feel more confident & empowered, whether you're living with PKD or supporting a loved one who is.
Ciara Morin is a PKD patient, advocate, & wellness coach. She is a Registered Holistic Nutritionist who is passionate about educating the community on the nutritional, lifestyle & mental health aspects of living with a chronic illness like polycystic kidney disease. She believes there is so much to be done to support the health of a PKD patient long before kidney failure occurs; proactive healthcare, personal empowerment and a strong sense of community are what she believes every patient deserves to experience.
3:55 pm - 4:00 pm EST: Closing remarks - Jeff Robertson
Jeff Robertson, Executive Director for the PKD Foundation of Canada, wrapped up the day with some brief closing remarks.