Media and News
June 30, 2020

June 2020 PKD e-News

d024d2bc-33f4-4ed9-a154-38a470b3214c.jpg

June 2020

Greetings!

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.

Learn

Upcoming Webinar (Presented in French): How COVID-19 Affects the PKD Population

The PKD Foundation of Canada will be hosting a webinar, presented in French, 'How COVID-19 Affects the PKD Population.' This webinar will be taking place on July 9th 2020 at 7pm EST via Zoom. This webinar will give you the opportunity to learn about the latest information about COVID-19 and to ask questions to one of Canada’s leading ADPKD specialists, Dr. Guillaume Bollée.

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?
  • 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?

    This event is complimentary. All are welcome!

Register Here!


Comment la COVID-19 affecte-t-elle la population atteinte de la MPR- présenté en français

Quand: Le 9 juillet 2020 de 19 h à 21 h, heure de l’est

Où: Depuis le confort de votre domicile!

La COVID-19 est un problème de santé grave dont les conséquences sur nos vies continuent d’évoluer au quotidien. En cette période sans précédents, les personnes ayant des conditions préexistantes doivent faire particulièrement attention. Notre objectif est de vous fournir les informations les plus à jour relatives au virus et de vous apaiser en cette période difficile.

La Fondation canadienne de la MPR est fière de vous présenter ce webinaire gratuit : Comment la COVID-19 affecte-t-elle la population atteinte de la MPR. Il vous donnera l’occasion de poser des questions à l’un des principaux spécialistes de la MPRAD du Canada.

Les patients et leurs proches sont invités à participer au webinaire pour en apprendre davantage sur les sujets suivants et bien d’autres encore :

  • Suis-je plus susceptible d’attraper la COVID-19 en raison de la MPRAD?
  • Suis-je plus à risque de développer des complications sévères?
  • Comment puis-je éviter d’attraper la COVID-19?
  • Que devrais-je faire si j'attrape la COVID-19 et que je suis atteinte de la MPRAD?
  • En quoi le traitement pour la MPRAD va-t-il changer pendant la pandémie de COVID-19?
  • Faut-il éviter ou arrêter de prendre certains médicaments?
Intervenant: Dr Guillaume Bollée

Cet évènement est GRATUIT. Vous êtes tous les bienvenues!


Canadian Society of Nephrology COVID-19 Rapid Response Team Home Dialysis Recommendations

The Canadian Journal of Kidney Health and Disease has provided recommendations on managing care for those who are in end-stage kidney disease or being treated with home-dialysis treatments during the pandemic.

The recommendations were developed consensus-based recommendations virtually by the Canadian Society of Nephrology work-group with input from ethicists with nephrology training. The recommendations were further reviewed by community nephrologists and over a CSN-sponsored webinar, attended by 225 kidney health care professionals, for further peer input. The final consensus recommendations also incorporated review by the editors at the Canadian Journal of Kidney Health and Disease (CJKHD).

You can read the key findings and reccomendations here.

ICYMI: How COVID-19 Affects the PKD Population

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 hosted an educational webinar, 'How COVID-19 Affects the PKD Community' on June 4th 2020. This webinar gave our community the opportunity to ask questions to one of Canada’s leading ADPKD specialists, Dr. Matt Lanktree.

Thank you to those who joined us! In case you missed it, you can watch the recording of the presentation here and the Q&A segment 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 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 had 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!

Extra Special Father's Day for Selfless Dad Ivan, Who Donated kidney to son (6)

"Father's Day this year will be extra special for dad Ivan Kinahan, as it will mark just over one year since he donated a kidney to son Sam (6).

Sam had been on dialysis since he was four months old and life for the Baldoyle family has changed dramatically since the transplant."

Read more here!

June is National Indigenous History Month!

In June, Canada celebrates the history, heritage and diversity of indigenous peoples. This month is about reflecting on, recognizing and appreciating the contributions, sacrifices and strength of Indigenous peoples.

In the article linked below, Dr. Tait and Dr. Moser highlight the inequalities in rates of kidney disease among Indigenous peoples. "Higher rates of kidney disease and other conditions driven by generations of health inequities mean Indigenous peoples in the province (Saskatchewan) are significantly more likely to need a kidney transplant — but may also be less likely to get one.

The result is the Saskatchewan First Nations and Métis Organ Donation and Transplantation network, a group of elders, patients, students and professionals hoping to understand why the problem persists and how to solve it."

Read more about the First Nations and Métis Organ Donation and Transplantation network here.

June is Pride Month in Canada!

June is National Pride Month in Canada. The PKD Foundation of Canada strongly supports the members of the LGBTQ2IA+ community and stands beside them in the fight for global equality.

"When asked about the history of pride, often the first thing that comes to people's minds are the Stonewall Riots. Canada, however, has it's own rich history and turning points in the struggle for and eventual celebration of LGBT rights."

Learn more about the history of Canadian Pride here!

Parents in Kamloops Hope to Find Living Kidney Donor for Son

"Jim Butterfield is hoping for the best Father’s Day present he can imagine — a kidney for his son.

During the Christmas holidays of 2018, Mike Butterfield was diagnosed with a genetic condition he unknowingly had his whole life — polycystic kidney disease, or PKD.

Jim and Rosalyn Butterfield of Kamloops are not only trying to find a kidney for their son, but are seeking to raise awareness of the disease, as well."

Read the full article here.
Support

 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.

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.