March 30, 2021

March 2021 PKD e-News


March 2021


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


Upcoming BC Renal Webinar: Joyful Eating and Movement in Kidney Disease

"Tired of the same meals, and interested in learning more about choosing more variety and enjoying your meals while considering kidney health? Wish you could be more active but not sure where to start?

Let Dietitian Dani Renouf, Physiotherapist Judy Lau and our Certified Yoga Instructor and Patient Partner Tamara Graham show you how you can improve your health and quality of life by starting small and creating goals that are joyful."

When: Thursday, April 1, 2:00 – 3:30 pm (PDT)

Be sure to register in advance here!

Upcoming Webinar: Advancing PKD Care in Today’s Society

Thursday April 22 - 3:00pm- 4:00pm EST (11:00am- 12:00pm PST)

This webinar will dive into a series of resources that Dr. Micheli (Mike) Bevilacqua and his team at BC Renal have developed in British Columbia for ADPKD care. These resources are to help with delivering more tailored services to ADPKD patients in kidney clinics. The goal is to put tools in place so that all kidney clinics can offer ADPKD specific care, supported by a network of clinicians around the province. Dr. Micheli (Mike) Bevilacqua will explain how their plan was developed, how it will be implemented, and what they have learned so far.

Although this webinar relates to patient care in British Columbia, the information and resources shared will be of value to patients nation-wide. We hope you can join us!

To view event details in French, click here.

Talking to Kids About PKD

"As a parent, you may struggle with how and when to talk about PKD in your family. While every child and family is different, Gillian Mayersohn, Psy.D., a pediatric psychologist at St. Louis Children’s Hospital, says in general, talking to kids about PKD is a good idea."

Read the full article here!

Ontario Revises 2nd Vaccine Dose Timeline for Transplant Patients

The Ontario government confirms it has revised the second vaccine dose timeline for some immunocompromised people.

The Vaccine Clinical Advisory Group advised the Ontario government to follow the recommended dose intervals for vaccines as suggested by the manufacturer — generally translating into a three-week interval between doses, for transplant and certain cancer patients.

Read the full article here.

March 11th was World Kidney Day!

World Kidney Day 2021 was all about “Living Well with Kidney Disease”. The objective was to increase education and awareness about effective symptom management and patient empowerment, with the ultimate goal of encouraging meaningful participation in every-day life. Whilst effective measures to prevent kidney disease and its progression are important, patients with kidney disease – including those who depend on dialysis and transplantation – and their care-partners should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities.

WKD calls for the inclusion of life participation as a key focus in the care of patients with CKD and as a building block towards delivering the ultimate goal of living well with kidney disease.

To learn more about World Kidney Day, click here!

PKD Foundation of Canada Launches New Winnipeg Chapter

It is with great excitement that the PKD Foundation of Canada announces the launching of the Winnipeg Chapter with Tetyana Walker in the position of Chapter Coordinator!

Get to know Tetyana by watching her video for World Kidney Day here

April 7th is Green Shirt Day!

"On April 6, 2018, Canadians were heartbroken to hear the news of the Humboldt Broncos bus crash. Of the 29 passengers, sixteen lost their lives and thirteen will all bear physical and emotional scars for life.

On April 7, 2018, Humboldt Broncos defenceman Logan Boulet succumbed to his injuries. His parents, Bernadine and Toby Boulet offered to donate his organs so that six lives could live on. They did so because Logan told his parents he was registering as an organ donor and that he was inspired by his coach and mentor Ric Suggitt. Ric passed on June 27th, 2017 and was also an organ donor and saved 6 lives.

Green Shirt Day was created to honour, remember, and recognize all the victims and families of that fatal crash and to continue Logan’s legacy by inspiring Canadians to talk to their families and register as organ donors."

To learn more about how you can get involved on April 7th, click here!

The Logan Boulet Effect: How a Selfless Gift Inspired Thousands

Virtual Event:
Tuesday April 6th 2021- 12:00pm-1:15pm PST

"Join BC Transplant for a conversation with Toby and Bernadine Boulet, whose son Logan became an organ donor following his death in the tragic Humboldt Broncos bus crash in April 2018. His gift of life inspired tens of thousands of Canadians to register as organ donors in the days following his donation.

Joining the Boulets are three British Columbians who have been inspired by Logan's gifts of life:
- Elaine Yong (our moderator), whose daughter Addison received a heart transplant as an infant
- Jillianne Code, a two-time heart transplant recipient
- Stephen Gillis, who received a kidney transplant from a living donor in 2020"

Make sure to register for this event in advance here.

New Living Transplant Podcast Episode:
Let the Sunshine In- The Legacy of Logan Boulet
In this episode, Courtney and Brittany are joined by Toby and Bernadine "Bernie" Boulet, the parents of Logan Boulet. In 2018 Logan became an organ donor after he was injured in the tragic Humboldt Broncos bus crash. Logan inspired hundreds of thousands of Canadians to register as organ donors, resulting in an unprecedented increase in donor registration, a movement that came to be known as the Logan Boulet Effect. Toby and Bernie share their story with our hosts, discussing how Logan arrived at the idea of organ donation, saying goodbye at the hospital, and how they keep memories of Logan alive today. Also in this episode: what the Boulets have learned about organ donation and the transplant community since becoming advocates three years ago, how and why you should have the conversation about organ donation, and Green Shirt Day 2021.

Living Transplant episodes are available on Spotify, Apple Podcasts and Google Podcasts. For more information and to download episode transcripts, visit UHN's Living Transplant Podcast.

Getting Your Life Back From Polycystic Kidney Disease
"Sue Jobson is a British health coach, healer and writer who inspires people with kidney disease to get their health, happiness and freedom back. Here she shares her story on how she adapted her life after an out-of-the-blue diagnosis with Polycystic Kidney Disease almost 30 years ago, and how she now helps others to adopt the best ways for preventing kidney disease."

Read the full article here!

April is Be A Donor Month!
"Today, in Canada, there are over 4,000 people waiting for a lifesaving organ transplant. This is their only treatment option, and every 3 days someone will die because they did not get their transplant in time.

But you can help. When you register your consent for organ and tissue donation, you let those waiting know that you would help them if you could."

If you live in Ontario, register to become and organ donor today, here! If you live outside of Ontario, register here!

How an Albertan Mom is Honouring Her Son’s Kidney

"Though illness can be isolating, that hasn’t been Jan’s experience with PKD. Speaking with her, she mostly touches on family, love, gratitude, and hope."

Read the full Maclean's article about Jan and her PKD journey here!

March is National Kidney Month!

Thank you to all those who participated in #31Days of #PKDChallenges!

Kidney Month is recognized in March across Canada and the United States. We spend this time raising awareness of the importance of our kidneys to our overall health, and to reduce the frequency and impact kidney disease and its associated health problems have on an international level.

In honor of March’s National Kidney Month, we once again took on daily challenges to raise awareness of polycystic kidney disease (PKD). You can check out past #PKDChallenges on our FacebookTwitter and Instagram.

DIY2ENDPKD: How To Plan Your Own Successful Fundraiser

2020 was a difficult year for many of us, including the charitable sector and the PKD Foundation of Canada. With event cancellations, funding shortfalls and increased need for support, now more than ever, you have the opportunity to make an even bigger impact with your support.

With the tips provided here, you can plan your own successful fundraiser to make your support go further in the fight to #endPKD.