Media and News
June 01, 2020

May 2020 PKD e-News

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May 2020

Greetings!

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

Learn

Upcoming Webinar: COVID-19 and Transplant Patients- Your Questions Answered

COVID-19 is a serious health concern and the impact on our lives continues to evolve on a daily basis. In these unprecedented times, individuals with pre-existing conditions need to be especially careful. It is our goal to provide you with up-to-date information as it relates to this virus, and to help ease your mind during this challenging time. 

The PKD Foundation of Canada is proud to present this complimentary webinar, How COVID-19 Affects the PKD Population. This webinar will give you the opportunity to ask questions to one of Canada’s leading ADPKD specialists. 

Patients and their loved ones are invited to join this webinar to learn about the following topics and more:

  • Am I more likely to get COVID-19 due to ADPKD?
  • What should I do if I get COVID-19 and have ADPKD? 
  • How will treatment of ADPKD change during the COVID-19 pandemic
When: Thursday June 4th 2020
Time: 7:00- 8:00pm EST
Where: From the comfort of your home!
Speaker: Dr Matthew Lanktree M.D.,Ph.D

This is a FREE event. All are welcome!

Please note, the online registration code will be emailed to you on June 3rd 2020. 

Funding Awarded to Landmark Research Project Studying Chronic Pain in ADPKD

"Pain is one of the most debilitating and yet under recognized consequences of polycystic kidney disease, and yet we know very little about how best to treat it. This landmark study will allow us to understand PKD pain in great detail, providing a crucial stepping stone towards finding treatments that relieve the pain that so many suffer every day. The PKD charity and the NIHR have been instrumental in making this important research a reality." - Dr Thomas Hiemstra

Learn more about the EASE-PKD study here.

Max and Keira’s Law – the Organ Donation (Deemed Consent) Act, has now come into effect in England

Max and Keira’s Law – the Organ Donation (Deemed Consent) Act, has come into effect today, 20 May 2020.
Under the new law, all adults in England are considered as having agreed to donate their own organs when they die unless they record a decision not to donate (known as ‘opting out’) or are in one of the excluded groups.

Learn more about Max and Keria's Law here.

Covid-19 Webcast Series

Hosted by the PKD Foundation, researchers and physicians answer your questions about the impact of COVID-19 on PKD, dialysis, transplantation, and stress in a four part webcast series.

Watch the webcast series here!

Looking After You Emotional Well-being during Covid-19

In this educational webinar, Dr Suzanne Whitehead, a clinical Renal Psychologist at Southmead Hospital, discusses ways of looking after ourselves under Covid-19 restrictions.

You can view the recording of this webinar here.

May 4th-10th Was Mental Health Week

This year, Mental Health Week falls within a time of great uncertainty. “It is an anxious and stressful time for everyone, and it’s okay if you feel more anxious than usual, and it’s okay to take time for yourself to manage your mental health. You are doing the best you can in a time when simply turning on the news can feel overwhelming.”

The Canadian Mental Health Association has provided resources for those enduring the added stresses of Covid-19 and those who are suffering from mental illness here. You can read these insightful articles by clicking on the links below!

For a full list of articles from the Canadian Mental Health Association, visit their website here.

Canadian Team Treating COVID-19 Patients With Dialysis Sees 'Very Positive' Early Signs

A team of Canadian researchers trying to treat seriously ill COVID-19 patients with a modified form of dialysis is seeing promising signs that they are able to fend off deadly immune system responses to the novel coronavirus.

"So far, the responses have been very positive – but obviously it's very early days," Dr. Chris McIntyre, who leads the team at the Lawson Health Research Institute in London, Ont., told CTV's Your Morning on Wednesday.

Read the full article here!

World Kidney Day Shares School Kits for Kids!

Our friends at World Kidney Day have shared educational Powerpoint presentations for kids, all about kidneys, how they work and how to keep them healthy. These presentations are tailored to school-aged children 6-11 and 12-16.

Download the presentations here!

10 Ways to Stay Active While Social Distancing

"There’s no denying that the Coronavirus (COVID-19) has put a stop to almost all outdoor activities. With increased home quarantines and social distancing measures, cancelling outdoor adventures has become the new norm. This may leave you bored, anxious, and searching for ways to stay fit. We feel ya! That’s why we’ve put together this guide with ways to stay sane and active during the pandemic."

Learn more from 'Trip Outside' on how to stay active during quarantine here.

From Student to Patient to Spring Graduate- A First-hand Perspective

"While 2020 has been as unusual a year as you could ever imagine, with Snowmaggedon, COVID-19 and all our graduation plans being either cancelled or postponed, including our licensing exams, 2019 was also a unique year for me.

Starting off the last year of my program, I had a new outlook on patient care.

When given the option for selecting our final clerkship rotations this past fall, I knew I had to find a way to study the kidney."

Read more about Kristin Walsh, #PKDWarrior, and her journey here

Why You Should Keep Your Appointment With Your Family Doctor

"The COVID-19 pandemic has resulted in empty streets and public spaces, and to the concern of family doctors, empty doctors’ offices and emergency departments.

Unity Health Toronto doctors Karen Weyman and Daphne Williams are here to tell you that not only are family doctors very much available to safely see their patients, but that delaying or skipping a necessary appointment could be damaging to your health."

Read the full article here!

Awareness

Bike to the Moon Campaign Postponed Until 2021

After careful consideration for the safety and well-being of the PKD and transplant communities and their loved ones, the PKD Foundation of Canada has made the difficult but necessary decision to postpone this year’s Bike to the Moon fundraising campaign, which was to take place from June 1st-30th.

Many factors were taken into consideration when making this decision, including the constant and careful review of municipal, provincial and federal COVID-19 case numbers, and physical distancing and pandemic recommendations from both the Public Health Agency of Canada and the Government of Canada.

With every city and town nationwide having different bylaws in place with respect to park and trail access, we also didn’t want to add any unnecessary confusion as it relates to local closures.

We thank those of you who have reached out and offered your support of this decision as well. We value your input so much, and as always - have your best interests in mind!

The Bike to the Moon will be back BIGGER and BETTER in 2021 and we can’t wait for you to join us!

Should you wish to purchase any of the 2020 Bike to the Moon branded cycling gear, our online store will remain open and can be found here.

Stay tuned for some exciting news on alternative family-friendly fundraising opportunities we will be planning over the course of the summer!


Woman Donates Kidney Amid Pandemic

United States Congressional Candidate Kiani Gardner said she wasn’t expecting to get the call that it was time to donate her kidney, especially during a global pandemic.

“There was a man who needed a kidney. His wife wanted to give to him, but she wasn’t a match. But since I was a match, I could give to him. And since she was willing, she ended up giving to a woman who had been waiting for nine years on the deceased donor list,”

Read more about Kiani Gardner and donor recipient, Tyson Bell here.

B.C.'s Plans to Resume Surgeries is Welcome News

"Thursday's announcement that British Columbia will begin resuming surgeries postponed to deal with the COVID-19 pandemic is welcome news for many across the province, but especially so for Michael Coyle. 

The Coquitlam man, who suffers from polycystic kidney disease, had been waiting to undergo a kidney transplant when the pandemic struck. This week, he received a call from the transplant clinic that he had a tentative surgery date." 

Read more about Michael Coyle's story and B.C.'s transplant backlog here.

2020 Lillian Jean Kaplan International Prize for Advancement in the Understanding of PKD Award Winner

Congratulations to this year’s award winner, Arlene Chapman, Ph.D., the director of the Chief Section of Nephrology at the University of Chicago. The PKDF had hoped to present the award at the International Society of Nephrology World Congress of Nephrology in Abu Dhabi, UAE in late March, but the conference was canceled due to the COVID-19 pandemic. Instead, the award will be officially presented at WCN’21 in Montreal, QC, Canada in April 2021.

Read more about Arlene Chapman's work here

SUPPORT

Support the PKD Foundation of Canada by Leaving a Future Gift

Legacy Gift

Your legacy gift will enable the PKD Foundation of Canada to create a powerful philanthropic legacy by making a direct impact on the advancement of critical Canadian research. If you have not had the ability to make a major gift during your lifetime, legacy giving can be meaningful source of funding from you.

A legacy gift is a gift by Will with lasting meaning and is the simplest way to create a legacy of everlasting hope. It is a future gift that will not cost anything during your lifetime, with no extra out-of-pocket costs and your income will not decrease.

You can learn more about planned giving by clicking here.

Wills and Bequests
Make a future gift of lasting support by remembering the PKD Foundation of Canada (PKDFOC) in your Will. A Bequest in your Will may be the biggest gift of your life, and has the power to change the lives of all affected by PKD for better. Help even more PKD patients look forward to a future of full recovery.

This gift will not cost you anything during your lifetime, with no extra out-of-pocket costs and your income will not decrease. One of the benefits of making a Bequest is that your estate obtains a charitable tax receipt for the full amount received. Also, if stocks or real estate you left have appreciated in value, your gift may be exempt from capital gains.

You can learn more about bequests by clicking here.


 Help People SEE ADPKD: Share Your Story Today!



SHARE YOUR STORY!

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.