June 28, 2023

June 2023 issue | PKD e-News

Welcome to the PKD Foundation of Canada's June e-News! We have provided information important to helping you take action in your journey with PKD.

To view the e-News in French click here!


We hope you’ll join us for our webinar, co-hosted with the Canadian Liver Foundation, to learn more about liver transplantation for PKD and PLD patients. Dr. Leslie Lilly, MD MSc FRCP(C) will summarize the role of liver transplantation in the management of PKD and PLD, and will also discuss the outcomes of liver transplantation in patients with these diseases. We will also be joined by PKD patient and two-time liver transplant recipient, Jan Robertson who will share her journey through the transplant process. Register today at:!

DID YOU KNOW: All of our past webinars are available online at! They discuss topics relating to PKD, such as managing one’s mental health, medical cannabis in patients with PKD, and clarity on keto! Visit to learn more.

The best nutrition care for those with kidney disease is one that is personalized to your health goals, nutrition status, other health conditions, and blood and urine tests. Nutrition is important for those with PKD and the information has only recently begun to appear from research, lived experiences and on the internet. Read Emily Campbell's new blog post, where she breaks down some of the specific nutrition recommendations for PKD!

"On May 10, the ongoing FALCON clinical trial was terminated early. FALCON is a Phase 3 clinical study evaluating the effectiveness and safety of bardoxolone methyl (an oral investigational drug) in patients with ADPKD. The study aimed for 850 participants to be studied for two years."

Read the full story from the PKD Foundation (US) here!

A literature review was conducted by the Academic Nephrology Unit of the University of Sheffield to summarize the patient perspective on ADPKD based on the current published literature. The findings of this review highlight the burden and uncertainty associated with ADPKD from a patient's perspective. Read the full review here.


We want to take a moment to express our heartfelt gratitude to all Bike to the Moon cyclists for your enthusiasm and commitment throughout the 2023 Bike to the Moon campaign. From the early morning speedsters to the laid-back cruisers, you all brought your A-game and made a massive impact in spreading PKD awareness!

These funds will play a vital role in supporting critical research, enhancing patient care, and providing valuable resources for individuals and families affected by PKD. Your contributions have directly fueled these essential initiatives, and we simply cannot thank you enough for your incredible support

"Colin always lived life to the fullest, and never let PKD stop him from having a positive outlook on life. Staying positive was important, knowing one day that he too would need a kidney transplant."

Polycystic kidney disease (PKD) is one of the world’s most common, life-threatening genetic diseases. Your stories can help people paint a more powerful picture of PKD and the lives it affects.

Help give a voice to a widely unknown disease by sharing your story here.

You can read some of our Voices of PKD here!


Last month, Canadian Blood Services, on behalf of Canada’s organ and tissue donation and transplantation community, celebrated the Kidney Paired Donation Program reaching 1,000 transplants! Here's to the next 1,000!

To learn more about the Kidney Paired Donation Program, click here.

Organ donors Mark and Lynn Scotch get a surprise meeting live on TODAY with two of the people who their selfless donations helped save. Watch the heartwarming video here!

Patients with ADPKD can have issues in other organs beyond the kidney. Dilation of blood vessels in the brain, brain aneurysms, are more common in patients with ADPKD and can result in neurological damage. Researchers at the University of Maryland are conducting a research study to identify genetic factors associated with brain aneurysm formation in ADPKD patients.

This study is OPEN to Canadian residents. To learn more, click here!

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.