February 25, 2020

February 2020 PKD e-News


February 2020


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


Toronto Chapter Meeting: What's New in PKD Research - Recent Advances in Diagnostic, Prognostic Testing and Novel Therapies.  

Sunday, March 1st 2020
From 2pm to 4pm

North York Civic Centre
Community Room 4
5100 Yonge St
North York, ON M2N 5V7

Meeting Details: 
Join us as Dr. York Pei provides us with an update on current and pending advancements in diagnostic and prognostic testing and novel therapeutics related to Autosomal Dominant PKD (ADPKD).

About the speaker:

Dr. Pei is a Professor of Medicine at the University of Toronto and a Staff Nephrologist at the Toronto General Hospital, University Health Network. He obtained his research training in Clinical Epidemiology at McMaster University and later on, in Human Molecular Genetics in Toronto. 

The major theme of his research program is to identify genetic factors involved in the initiation or progression of common kidney diseases as potential targets for novel diagnostic tests and therapies. His research focuses on genetic, genomic and translational research of three common kidney disorders: Autosomal Dominant Polycystic Kidney Disease, IgA nephropathy and idiopathic nephrotic syndrome; and is supported by grants from the PKD Foundation of Canada, the Kidney Foundation of Canada, Physicians Incorporated Foundation and the Canadian Institutes of Health Research.  


Montreal Chapter Educational Meeting: Healthy Living and Keeping a Low Salt Diet.  

Friday, March 6th 2020 at 6:30PM - 8:30PM

Civic Center Theater of Dollard-Des-Ormeaux
12001 Salaberry Blvd
Dollard-Des Ormeaux, QC H9B 2A7

Meeting Details: 
This long awaited event will help many learn about the complexities associated with a kidney disease, maintaining a healthy lifestyle, and provide information on the benefits of a low-salt diet.

Following the presentation, the speakers will take time to answer your questions related to healthy lifestyle. This will be a very interactive meeting. 

About the speakers:

Dr. Sameena Iqbal is a nephrologist (kidney specialist) who has trained at Queen’s and McGill University. She has completed a master’s degree in community health and epidemiology. Medical education, chronic kidney disease, kidney care in the community and patient safety are her interests. The nephrology team is working towards a focused clinic in polycystic kidney disease at the Lakeshore General Hospital.
Houda Hatem is a nutritionist that can assess the nutritional needs of hospital patients as well as external clinics. In collaboration with the specialists and patients, she manages their nutritional follow ups and conducts screenings for malnutrition cases. Her fields of specialty include critical cases, general medicine, geriatrics, palliative care, oncology and nephrology.  


ReferPKD Tool Now Available Nationwide on

The PKD Foundation of Canada is proud to continue supporting uKidney's ReferPKD tool, which is now accessible nationwide on our website here.

This tool will help you connect your general practitioner to physicians or clinics with a stated interest in autosomal dominant polycystic kidney disease. Your GP can then visit and have the option to refer directly to the physician with a well-informed referral, complete with all the information needed to plan a referral and omitting what isn't required.

Please note: At this time, and only list Canadian physicians or clinics with a stated interest in ADPKD.

PKD Health Note: Soda Pop and PKD

"There are some things that are easy to figure out: how to run a microwave, how to cook ramen noodles, and donating cars to a good cause. But other things can be confusing and feel like a minefield when navigating the available information. Like understanding the IRS tax code, picking apart what is canon and what isn’t in the Marvel Comic universe, and knowing whether or not you should drink soda pop when you’re dealing with kidney disease."

You can read the full article here.


March is National Kidney Month!


Join the 31 Days of PKD Challenges!

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 will once again be taking on daily challenges to raise awareness of polycystic kidney disease (PKD). Leading up to March 1st, stay tuned for information on how you can participate in the 31 Days of PKD Challenges!

You can follow along on
Facebook, Twitter and Instagram for daily updates on our progress and share your progress using #PKDChallenge, #KidneyMonth, and #endPKD.

World Kidney Day is March 12th 2020!

"Burden of kidney disease

Kidney disease is a non-communicable disease (NCD) and currently affects around 850 million people worldwide. One in ten adults has chronic kidney disease (CKD). The global burden of CKD is increasing, and is projected to become the 5th most common cause of years of life lost globally by 2040. Chronic kidney disease is a major cause of catastrophic health expenditure. The costs of dialysis and transplantation consume 2–3% of the annual healthcare budget in high-income countries; spent on less than 0.03% of the total population of these countries. In low-income and middle-income countries, most people with kidney failure have insufficient access to lifesaving dialysis and kidney transplantation.

Crucially, kidney disease can be prevented and progression to end-stage kidney disease can be delayed with appropriate access to basic diagnostics and early treatment. However, while national policies and strategies for NCDs in general are present in many countries, specific policies directed toward education and awareness about kidney disease as well as CKD screening, management and treatment are often lacking. There is a need to increase the awareness of the importance of preventive measures throughout populations, professionals and policy makers.

What we call for

This year World Kidney Day continues to raise awareness of the increasing burden of kidney diseases worldwide and to strive for kidney health for everyone, everywhere. Specifically, the 2020 campaign highlights the importance of preventive interventions to avert the onset and progression of kidney disease."

To learn more about World Kidney Day, visit their website here.


Former Blue Jay Passes Away Due to Complications of PKD

Toronto Blue Jays and baseball icon, Tony Fernandez passed away this past Sunday, February 16th in a Florida hospital after a long battle due to complications from polycystic kidney disease.

Rest In Peace, Tony. We send our heartfelt thoughts and prayers to the entire Fernandez family during this difficult time.

You can read the full article here.


 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! 

Toronto Marlies Zamboni Driver and Kidney Transplant Recipient Gets Called Up to the NHL Against the Maple Leafs

"A 42-year-old goaltender who practices with the Maple Leafs, beat them on Saturday night in their own arena.

David Ayres, who used to drive the Zamboni at Toronto Marlies games and also practices with them, was pressed into service as an emergency goaltender and made eight saves in the Carolina Hurricanes’ 6-3 victory at Scotiabank Arena.

Ayres is the first emergency net-minder to be credited with a victory in NHL history. He wore a Marlies face mask, blue and white goalie pads, mitt and blocker, and a Leafs T-shirt beneath the Carolina sweater he quickly threw on before entering the game after injuries sidelined both of Carolina’s goalies."

You can read the full article here.



ADPKD Research Priority Setting Partnership Questionnaire

Help identify the top ten most important things to research in ADPKD - autosomal dominant polycystic kidney disease.

The PKD Charity UK, in association with James Lind Alliance, has collected a range of ideas from patients, carers and healthcare professionals to find those that remain unanswered - such as how to stop cysts growing, how to slow progression, what's the best diet, how can PKD care be better organised.

Now we want YOU to pick the research ideas that are most important to YOU

It doesn't matter if you are a patient directly affected by ADPKD, a family member or carer, or health/social care professional. It should only take a few minutes but your voice will influence ADPKD research for years to come.

You can access the questionnaire 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.

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.