January 31, 2020

January 2020 PKD e-News


January 2020


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


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.

Voices of PKD: Luisa Miniaci-Di Leo, Dollard-des-Ormeaux QC

“Prior to losing my dad in December 2013, I learned that there was a Canadian Foundation that existed and supports patients with polycystic kidney disease (PKD). I promised him that I was going to do something about PKD, and the following spring I met with Jeff Robertson (Executive Director, PKD Foundation of Canada) in Montreal to discuss the need to raise awareness. I became an open book about my disease, and those who didn’t know were shocked to learn about my diagnosis. Most replied, “But you look great”. They had no clue about what was going on inside of me. I used every social media outlet to talk about this disease, how it took away the ones I loved, affected my life and that of my loved ones on a daily basis."

Read Luisa's full story here.


James Blunt Breaks Down In Tears In Heartbreaking Music Video For New Track 'Monsters'

"James Blunt just dropped the heartbreaking new music video for his latest single “Monsters”. 

Blunt, who shot to fame with “You’re Beautiful” back in 2004, breaks down in tears in the emotional clip as he sings about his father, Charles Blount, who is battling stage 4 chronic kidney disease.

Watch the music video and read the full article here.

James was also recently on Good Morning Britain and shared the news that a donor had been found for his father and that the surgery was going to take place in the next couple of days!
You can read more about James' interview 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! 


5 Ways To Inspire Living Kidney Donation

"It takes courage to ask others for help—and there’s no bigger ask than asking for a kidney. The mere thought of putting someone at risk (for your own benefit) could push anyone outside their comfort zone. 

Begin by sharing your story. If you don’t feel comfortable telling your story, consider having a family member or friend become your donor advocate to help you spread the word and raise awareness about living donation and your need for a kidney."

Read the full article 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.


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.  


LISTEN: New Podcast from the Clinical Journal of the American Society of Nephrology: Epidemiology of ADPKD

The prevalence of autosomal dominant polycystic kidney disease (ADPKD) remains controversial. Incidence rates in Olmsted County, Minnesota, during 1935-1980 were previously reported. The current work extends this study to 2016.

The Rochester Epidemiology Project and radiology databases of Mayo Clinic and Olmsted Medical Center (healthcare providers for Olmsted County) were searched to identify all subjects meeting diagnostic criteria for definite, likely, and possible ADPKD. Annual incidence rates were calculated using incident cases during 1980-2016 as numerator and age- and sex-specific estimates of the population of Olmsted County as denominator. Point prevalence was calculated using prevalence cases as numerator and age- and sex-specific estimates of the population of Olmsted County on January 1, 2010 as denominator. Survival curves from the time of diagnosis were compared with expected survival of the Minnesota population.

Listen to the newest podcast from the Clinical Journal of the American Society of Nephrology on epidemiology of autosomal dominant polycystic kidney disease in Olmsted County here.


Free Online Learning Module from the Can-SOLVE CKD Network

Can-SOLVE CKD Network's vision is by 2020, every Canadian with or at high risk for chronic kidney disease will receive the best recommended care, experience optimal outcomes, and have the opportunity to participate in studies with innovative treatments, regardless of age, sex, gender, location, or ethnicity.

They recently revealed Kidney Pro which is available now online. Kidney Pro is a free learning module that equips you with an understanding of the patient role in kidney research and empowers you to engage in the way that's best for you.

Become a kidney pro today by visiting Can-SOLVE CKD Network here.

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.

ICYMI: BC Renal to Cover Cost of Tolvaptan Effective January 2020

We're pleased to share that as of January 2020, BC Renal will begin funding the drug tolvaptan for the treatment of autosomal dominant polycystic kidney disease (ADPKD). Current guidelines recommend tolvaptan treatment only for ADPKD patients with rapidly progressing renal disease. BC nephrologists can apply on behalf of their patients. Funding will be approved based on formal criteria.

You can read more on this announcement from BC Renal here.

While British Columbia is the first province to provide this level of coverage, it is our hope that other provinces will now recognize the gap in accessibility to treatment options, and realize they can work within a similar framework to B.C. to offer a fair and reasonable approach to coverage for patients.

The PKD Foundation of Canada will continue fighting for equal access to treatment options on a national level and will keep you posted accordingly on progress made and advancements related to this matter throughout 2020.

Update on Coronavirus From the University Health Network, Toronto ON

The word coronavirus has been on the lips of people all over the world ever since reports of this virus spreading all over China filled the news.

To date, the virus has killed more than 100 people, infected at least 4,500 people in other countries and is showing no signs of slowing down.

Dr. Susy Hota, Medical Director of Infection Prevention and Control at the University Health Network, recently answered the top-asked questions about the new coronavirus for Global News.

You can read the full article here and get updates on the coronavirus 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.