Media and News
August 04, 2020

July 2020 PKD e-News

July 2020 PKD e-News

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July 2020

Greetings!

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

SUPPORT

Registration is Now Open for the 2020 VIRTUAL Walk to END PKD!

Join us for the 2020 Virtual Walk to END PKD, the PKD Foundation of Canada's signature fundraising campaign!

After careful thought and consideration related to COVID-19, the PKD Foundation of Canada has made the decision this year to turn our signature fundraising event, the #WalkToENDPKD, into a virtual fundraising celebration - taking place on SUNDAY, SEPTEMBER 27th! As always, the health and safety of our PKD family comes first, and we feel this is the best approach to take at this time.

To keep things simple, the online registration and fundraising process will remain the same as previous years. The only major change is instead of a select few large public gatherings, you now have the opportunity to choose your own path locally and walk for a cure with your immediate family and friends. We have a unique opportunity in 2020 as a nation to walk together in spirit, united in the fight to #endPKD

To learn more about this year's Walk to END PKD campaign, visit our blog post here.

To read our blog post in French, click here!

Donate Your Used Vehicle Today!

Do you have an old vehicle taking up space on your property? Visit www.endPKD.ca/donate to find out more about our partnership with Donate-A-Car!

Your donation will directly support the programs and services of the PKD Foundation of Canada, and will have a positive impact on the lives of those living with PKD.


Help People SEE ADPKD: Share Your Story Today!

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!

We Want To Hear From You!

Your opinion matters to us and we'd like to know more about your journey with PKD to help serve you better! If you are living with PKD, or a care-giver, friend or family member of someone who has PKD, this survey is for you!

You can complete our survey in English here!
You can complete our survey in French here!
Learn

Webinar Recording Now Available: How COVID-19 Affects the PKD Population

The PKD Foundation of Canada hosted 'How COVID-19 Affects the PKD Population' webinars with speakers Dr. Matt Lanktree and Dr. Guilaume Bollée (presented in French). These webinars gave our viewers the opportunity to ask questions to one of Canada’s leading ADPKD specialists.

Patients and their loved ones learned about the following topics and more:
  • Am I more likely to get COVID-19 due to ADPKD?
  • Am I more at risk of developing severe complications?
  • How to avoid catching COVID-19?
  • What should I do if I get COVID-19 and have ADPKD? 
  • How will treatment of ADPKD change during the COVID-19 pandemic? 
  • Are there some medications to avoid or stop taking?

    Thank you to all of those who were able to join us live! In case you missed it, recording of the webinars can be viewed on our YouTube channel here.

The PKD Foundation Presents a 4 Part 'COVID-19 Webcast Series'

"In this series, researchers and physicians answer your questions about the impact of COVID-19 on PKD, dialysis, transplantation, and stress.

The PKD Foundation is monitoring the unprecedented coronavirus pandemic. Information is rapidly evolving and may change or be updated. The information provided in the below webinars is accurate as of April 20, 2020."

Topics that be discussed include transplantation, dialysis and stress.

Watch the webcast series HERE!

What we Can Learn From People with Lived Experience of Mental Illness

Coping with COVID-19

"It may be a while yet before we know the full measure of the impact of COVID-19 on our mental health, but preliminary surveys indicate that many Canadians are reporting higher levels of psychological distress. To help guide us during these uncertain times, we reached out to members of the CAMH extended family – specifically people with lived experience of mental illness who have made a commitment to mental health advocacy. We asked them how they are coping themselves, and if they had any hard-earned wisdom from their previous struggles to pass on."

Read CAMH's contributor's stories of wisdom and recommendations here!


Mental Health Resources for those Living with Kidney Disease

"Just like taking care of our physical health, it's important to take care of our mental health.

Living with kidney disease can be challenging and affect mental health in different ways."

BC Renal has provided are some common topics issues patients and their loved ones face with accommodating resources here!


Nick Weig, US News Anchor, Shares His Story of Navigating the Pandemic with PKD

“As I have stated in the past, my condition leaves me seriously immuno-compromised, which is why I have not been at the anchor desk since the pandemic started. I have been at home now for nearly 120 days.

Not only limiting what I can do, but also what my wife and two young children can do. It is a terrible thing to ask of young children and, although I know it is necessary in these uncertain times, I know it is painful for a child to be told they cannot always play with others. But we have learned all too well how serious this is.”

Read more of Nick Weig's story here!

Donald Sidhu Finds a Living Liver Donor Match, His Sister Melissa Sidhu

"When he found out that an anonymous donor had come forward, Donald was so surprised. That's when I told him it was me. He was shocked. He didn't want me to do it, he was scared for me. It took some convincing."

Read Donald and Melissa's full transplant story here.


Plant-Based Diet or Vegetarian Diet – What is the Difference?

"Can I follow a plant-based or vegetarian diet if I have kidney disease or kidney failure? 

In years past, it was thought that having kidney disease and being a vegetarian was impossible to combine. But some recent scientific studies suggest otherwise. In fact, following a plant-based or vegetarian diet might have health benefits for people with kidney disease--if you know how to do it wisely. It may even help keep early kidney disease from getting worse."

Read the full National Kidney Foundation article here. 
AWARENESS

Voices of PKD- Marie-Pierre Shryburt

"In 1998, my mother received the news that would change her life forever. Her baby boy had autosomal recessive polycystic kidney disease (ARPKD). This disease would affect his kidney function and cause him to get dialysis or a kidney transplant in the future. However the future wasn’t promised. In July 2002, my mother gave birth to me, a baby girl, who was also diagnosed with ARPKD. This disease would affect my life in ways I would never imagine as well."

Read Marie-Pierre's full story here!


The Supreme Court of Canada Upholds Genetic Non-Discrimination Law

"Canada's highest court has issued a ruling today upholding a federal law preventing third parties, such as employers and insurance companies, from demanding genetic information from individuals.

In a 5-4 decision, the Supreme Court of Canada has decided the Genetic Non-Discrimination Act is a constitutional exercise of federal powers."

Learn more in the full CBC article here.

Self-Soothing Strategies to Help Break a Chain of Anxious Thoughts Quickly

"It's an unprecedented time in our lives, and many of us are dealing with feelings of great uncertainty about our individual futures and the future of our world. We're learning to adjust to new schedules, and seeking ways to handle a deluge of new information and cope with life changes. 

Anxiousness may arise as a normal reaction to this, and when our challenges feel overwhelming, chains of anxious thoughts can lead us to feeling hopeless and negative. Anxiety can also manifest in the body.

To help address anxiety when it arises, we invited two experts, Dr. Ana Bodnar, a registered clinical psychologist, and yoga and meditation teacher, and Pradeep Kumar, a former physician who teaches integrative mind/body medicine and meditation courses, to share simple and effective practices that can neutralize anxiousness and soothe in the moment."

Read the full article here!

Father and Son Mark 30th Anniversary of Kidney Transplant

"A father and son, featured in the Winnipeg Sun in August 1990, are celebrating the 30th anniversary of father Chris Hauff donating one of his kidneys to his then 10-year-old son Sean by taking a hot air balloon ride early next month.

The pair will take their trip in the hot air balloon on Aug. 5, four days prior to the anniversary of when Chris gave his left kidney to help treat Sean’s rare condition known as medullary cystic kidney disease." 

Read more about Chris and Sean's transplant story here!