July 2023 PKD e-News
Welcome to the PKD Foundation of Canada's July 2023 e-News! We have provided information important to helping you take action in your journey with PKD.
Pour voir l’infolettre de la Fondation canadienne de la MPR en français, cliquez ici!
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Registration for the PKD Foundation of Canada's 2023 Walk to END PKD is now open!
The Walk to END PKD is the PKD Foundation of Canada's signature fundraising event and helps to raise funds to support research projects aimed at understanding the causes of PKD, developing improved diagnostics, and identifying potential treatments. The PKD Foundation of Canada collaborates with leading researchers and institutions across Canada to drive scientific advancements and ultimately find a cure.
Michelle Lynne has over 9 years of non-profit experience in the healthcare, arts, and affordable housing sectors. She understands the impact of PKD, having had an aunt with another form of kidney disease, which led to kidney failure and long-term dialysis. Michelle Lynne is a writer and illustrator who helps businesses and nonprofits tell their story well, connect with communities of passionate people who love what they do, and increase their revenue or their reach. She is thrilled to contribute to the work of the PKD Foundation of Canada.
On August 29, 2023, the PKD Foundation (USA) will hold its first ever Externally Led Patient-focused Drug Development (EL-PFDD) meeting on autosomal recessive PKD (ARPKD) and Congenital Hepatic Fibrosis (CHF). The goal of this particular meeting will be to hear from patients and their caregivers about what it is like to live with kidney and liver disease, to help stakeholders understand the patient and caregiver experience. Canadian participants are welcome. To learn more and to register, click here.
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In our last webinar, Dr. Leslie Lilly, MD MSc FRCP(C) summarized the role of liver transplantation in the management of PKD and PLD, and also discussed the outcomes of liver transplantation in patients with these diseases. He was joined by PKD patient and two-time liver transplant recipient, Jan Robertson, who shared her journey through the transplant process.
You’ve probably heard the word “oxalates” before. But what are they, and is it important with PKD? This month, Emily Campbell, registered dietitian, shares strategies for managing your PKD through nutrition including a deep dive into oxalates and kidney stones with PKD.
A recent Canadian study published in the British Medical Journal suggests that even a small reduction in kidney function could result in poor long-term health outcomes for young people. Read the article here, to learn how to identify risk before it’s too late to take preventative measures.
Save the Date: Montreal PKD Patient Forum: Autosomal Dominant PKD in 2023. Join us for the upcoming FREE Montreal PKD Patient Forum!
Light food and beverages will be offered.
Free admission. City parking. Metro Sherbrooke. All are welcome!
Please note, registration is at 6:00 p.m. and the presentation will start at 6:30 p.m. sharp.
WHEN
Tuesday, September 19, 2023
On-site registration and light reception 6pm-6:30pm
Main presentation - La maladie polykystique rénale autosomique dominante en 2023 - 6:30pm-7:30pm
Breakout sessions from 7:30pm-8:30pm
WHERE
IRCM Montreal Clinical Research Institute, Jacques-Genest Auditorium
110 avenue des Pins Ouest
Montreal, QC H2W 1R7
Canada
*THIS PRESENTATION WILL BE IN FRENCH ONLY!*
AWARENESS
Jenn has given us an update on her journey since her first Voices of PKD story in December 2021. Last May, Jenn received a new kidney thanks to the Live Kidney Paired Donation Program, in Halifax NS. Read "Part 2" of her story, and share your own here.
Back in April, Canadian PKD patient and transplant recipient Jan Ehlert participated in the World Transplant Games in Perth, Australia, where she joined 1500 athletes of all ages (organ recipients, living donors, or donor family members) in a variety of competitive events.
Click here to read more about her rewarding experiences!
Working for a cure,
Your Friends at the PKD Foundation of Canada
Every gift - no matter the size - can make a difference in the fight against PKD. Please consider making a donation today.