January 06, 2020

December 2019 PKD e-News


December 2019


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


There's Still Time to Make Your Year-End Charitable Contribution!

With 2019 drawing to a close, we hope you remember the PKD Foundation of Canada
in your holiday plans and consider making a year-end gift to help advance Canadian research,
advocacy and support for more PKD patients and their loved ones.

Your gift this holiday season
will give hope to those affected by PKD!

The mission of the PKD Foundation of Canada is to strengthen national programs of research, advocacy, education, support and awareness in order to discover treatment options that will improve the lives of the 66,000 Canadians and 12.5 million people globally affected by this disease. Our vision is that no one suffer the full effects of PKD.

Your support - no matter the size - helps to strengthen these front-line initiatives, and will also allow us to continue being a national leader of clinical research and fellowship funding in the field of PKD.

As the end of the year closes in, time is running out on tax deductible donations. About 25% of Canadians take advantage of the sizeable benefits Canadian Federal and Provincials governments offer to Canadians who give to registered Canadians charities.

These tax incentives are significant, amounting to as much as 53% of your charitable donation. For many Canadians, it’s by leveraging these tax benefits that they can give more generously to charities. It makes them feel good and with their larger gift, it enables the charities they support to do more.

At the PKD Foundation of Canada, the needs for advanced treatment options and increased support of those living with PKD and their loved ones continues to grow. Please consider keeping us in mind as you make your end-of-year donation.


 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.


Join us for the Upcoming Halifax Chapter Meeting: Meet & Greet!

When: January 15, 2020 at 6:30PM - 8:30PM

WhereBedford Basin Farmers Market Cafe, 397 Bedford Hwy, Halifax, NS B3M 2L3.

Get to know your Halifax Chapter at our introductory meet and greet!

Gather with fellow PKD patients and advocates to hear about the Halifax Chapter's goals, share your ideas about future meeting topics and learn about volunteer opportunities.

We look forward to answering your questions!

Ongoing chapter activities include:
  • Educational meetings
  • Support groups & socials
  • Increasing awareness of PKD
  • Local fundraising events
PKD Foundation of Canada Chapters are led by volunteers who want to make a difference in the fight to end PKD! Contact Halifax Chapter Co-Coordinators, Brenda Mackenzie and Brenda Conway, today to find out how you can get involved with the Halifax Chapter.


Webinar "Treating Polycystic Kidney Disease: Could Diet Be The Key?"

If you missed the PKD Foundation's educational webinar entitled "Treating Polycystic Kidney Disease: Could Diet Be The Key?", you can still watch it on their website 

Dr. Thomas Weimbs, University of California Santa Barbara (UCSB), and his research team have discovered that diets that induce ketosis in mouse, rat and cat models slowed or reversed the growth of polycystic kidneys. Could this research be the key to slowing down the progression of PKD in humans? Join us as Thomas Weimbs, Ph.D. discusses his research.

Neera Dahl, M.D., Ph.D., Yale University School of Medicine, will also join us to provide a physician’s perspective on this new research. She will review the current consensus for best dietary approaches in ADPKD, and discuss the new findings in the context of best dietary strategies for patients.

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: 5 Holiday Eating Dos and Don’ts

"From Thanksgiving through New Year’s Day, most people end up eating more than they should. Sometimes it catches up with us in the way of a few extra pounds– the average American gains 1 to 2 pounds during the holiday season, but for those with dietary restrictions, there’s even more at stake than the number on the scale. Holiday eating extravaganzas may be putting your health and life at risk if you have kidney disease, high blood pressure or diabetes. Here are 5 holiday eating dos and don’ts to help you navigate everything from cocktail parties to the buffet table this holiday season!"

Read the full article here.

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.

In the News: Girl, Two, Receives Kidney From 'Superhero' Donor

"A critically ill two-year-old girl born with kidney disease has received a donor organ after her family launched a social media appeal.

Anaya Kandola, of Newcastle, had both her enlarged kidneys removed having been diagnosed with a rare condition.

After seeing the appeal on Facebook, Surinder Sapal, 36, of Wakefield, volunteered to donate one of hers."

Read the full article here.

In the News: Recipient & Donor Already Shared a Special Connection

"I call her my kidney sista,” kidney recipient Shelly Wheaton said. “You can't help but feel that bond and the gratitude I have in my heart for Andrea."

The journey hasn't been easy. Wheaton started a search for a living kidney donor, or hero as the window applique on the back of her car said. Wheaton didn’t realize her hero does her hair.

“There are not words to tell somebody how much you appreciate the fact they gave you a second chance at life," Wheaton said.

Read the full story 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!

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.