June 01, 2018

May 2018 PKD e-News

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


Gear Up: Check Out our Bike to the Moon Cycling Gear!

Bike to the Moon is an annual PKD Foundation of Canada global bikeathon. Collectively, we aim to bike the distance to the moon (384,400 km) and raise funds for critical Canadian PKD research within the Hereditary Kidney Disease Program at Toronto General Hospital. You can learn more and sign up here!


Bike to the Moon cycling gear is available to purchase as an option to help generate awareness for the PKD Foundation of Canada and the Bike to the Moon fundraising event, as well as to build visibility for those cycling as part of a team. 


Orders must be placed before midnight (Pacific Daylight Time) on Monday, June 4. Place Be sure to use coupon code ENDPKD to receive 10% off your order!


 Visit the online store


How do I participate in Bike to the Moon?
Bike to the Moon is a perfect event for both casual and serious cyclists. You can participate any time during June 22-25, 2018 by planning your ride solo, rallying a group of friends together or by organizing a community event. Choose a route in your own community or spend the weekend exploring new territories!

Check out the events happening in Hamilton and Niagara-on-the-Lake!


How many kilometres do I need to ride?
Whether you bike 1 km on one day or 400 km over four days, every dollar raised and every kilometre cycled brings a closer to the ultimate finish line: A cure for PKD!


Even if you can't ride, you can still help by creating your own virtual fundraising page.

Follow Bike to the Moon on social media:Facebook·Twitter·Instagram


In the News: Robots Grow Mini-Organs from Human Stem Cells
An automated system that uses robots has been designed to rapidly produce human mini-organs derived from stem cells. Researchers at the University of Washington School of Medicine in Seattle developed the new system. 
This advancement promises to greatly expand the use of mini-organs in basic research and drug discovery, according to Benjamin Freedman, assistant professor of medicine, Division of Nephrology, at the UW School of Medicine, who led the research effort.


Read the full article from the UW Medicine Newsroom, which describes experimenting with organoids produced with mutations that cause PKD.


Image description: Bird's eye view of a microwell plate containing kidney organoids, generated by liquid handling robots from human stem cells. 



Upcoming Montreal Chapter Music Heals Benefit Concert
Saturday, June 16, 2018
Doors open at 6:30pm
Show starts at 7:30pm


Théâtre Rialto
5723 Av du Parc
Montreal QC H2V 4G9

 Tickets ($35)

Event Details: The 3rd annual Music Heals Benefit Concert will be held on the evening of Saturday, June 16! Presented by the Montreal Chapter and Sophisticada Productions, this special fundraising event is a fantastic opportunity to take in the sights and sounds of up-and-coming artists and accomplished performers from across Montreal, while also supporting critical Canadian PKD research. Don't miss this family-friendly concert at the iconic Theatre Rialto.

To purchase your tickets, click here

Stay connected on social media and find out about the performers on the Montreal Chapter Facebook Page!

Ensure you are receiving all Montreal Chapter updates by emailing us a request to add you to the Montreal Chapter email list!


Join the 2018 Bike to the Moon Ceremonial Launch in Niagara-on-the-Lake!
Saturday, June 23, 2018
From 10:30am to 1:00pm
Registration from 10:30am to 11:00am
Private Residence on the Niagara Parkway
Submit your RSVP for details


Event Details: Join us for the 2018 Bike to the Moon ceremonial launch with a ride and picnic in a private residence along the Niagara Parkway! Ribbon-cutting ceremony starts at 11:00 am followed by a bike ride on the scenic Niagara Parkway. Following the ride, join us for a picnic lunch at the home of Drs. Doug Munkley and Laura Cousens. Enjoy lunch and get to know your local PKD community while taking in the view of the Niagara River!

Things to Remember:

  • Pack your own picnic lunch and remember to bring your water bottle to stay hydrated while cycling!
  • Please ensure you bring a helmet and any other safety gear you might need for the bike ride, as well as a sun hat and sunblock.
  • If you want to ride in style, place your Bike to the Moon cycling gear orders by end of day June 4! Get your gear here.


Join the Hamilton Chapter's Bike to the Moon Community Ride!
Saturday, June 23, 2018
From 2:00pm to 4:00pm
Registration from 2:00pm to 2:30pm
Bayfront Park
200 Harbour Front Dr
Hamilton, ON L8L 1C8



Event Details: Kick-start your Bike to the Moon weekend with the Hamilton Chapter! Join us at Bayfront Park to "Bike to the Moon" with your local PKD community on June 23! On-site registration begins at 2:00pm and the ride will commence at 2:30pm, following a brief opening ceremony. This event is perfect for everyone in your family and can also cater to those who prefer to walk the route with us. We hope to see you there!
Things to remember: 
  • Light snacks and water will be available; however, we encourage everyone to bring their own water bottle and nutrition to stay hydrated and energized while cycling. 
  • Please ensure you bring a helmet and any other safety gear you might need for the bike ride, as well as a sun hat and sunblock.
  • If you want to ride in style, place your Bike to the Moon cycling gear orders by end of day June 4! Get your gear here.
Ensure you are receiving all Hamilton Chapter updates by emailing us a request to add you to the Hamilton Chapter email list! You can also stay up to date by following the chapter on Facebook.


The Great Canadian Giving Challenge: Help us Win $10,000!

The Great Canadian Giving Challenge is here! Donate to the PKD Foundation of Canada from June 1 – June 30, 2018 and you have automatically enter us to win $10,000! The more you give, the more chances we have to win!

What is The Great Canadian Giving Challenge? It is a national public contest to benefit any registered Canadian charity. Each one dollar donated in June to a registered charity on or automatically enters the charity to win a $10,000 donation gift.

Only donations made on (including monthly donations processed during the contest period) or will automatically enter us for the $10,000 prize draw.

Help spread the word! You can also help by sharing our Giving Challenge donation page on your social media channels during the month of June, using hashtags #GivingChallengeCA and #endPKD!


Blog: PKD Will Not Beat Me - Mother Daughter Q&A
In honour of Mother's Day, Valen's most recent blog post revealed an intimate dialogue with her mom about their shared journey with PKD:


"Last week, my mom, Pam, faced her fear and flew alone for the first time, from Pennsylvania to California, to be with me for Mother’s Day. In celebration of her turning 62 this month and Mother’s Day, I wanted to do a special Q&A with her. I sat down with my mom, face-to-face in my living room, and asked her some difficult questions about our PKD journey together. We laughed, we cried, and I hope you are as inspired by my mom as I am.


Valen: What do you remember from the day you were diagnosed with PKD?
Pam: I remember being devastated and going with your dad to his mom’s house and crying. I was 21. At the time, my mom was on dialysis and I just couldn’t believe it. I always felt different than my sister and brother, and I wanted to be different by not having PKD like they did. I had already had your brother, Brandon, when I was diagnosed and the whole thing rocked my world." Read the complete Q&A here.

You can find these posts and others written by Valen here.

PKD Will Not Beat Me is an inspirational place for those seeking a positive environment to meet others with polycystic kidney disease (PKD) - to share stories, to ask questions and to make life-long friendships, encouraging each other to live positively along the way! PKD Will Not Beat Me is written by PKD patient and transplant recipient Valen Keefer.



Upcoming Hamilton Chapter Meeting: Meet & Greet
Thursday, June 14, 2018
6:30pm - 8:30pm
Williams Fresh Cafe (Bayfront)
47 Discovery Drive
Hamilton, ON L8L 8K4



Meeting Details: Get to know your Hamilton Chapter at our introductory drop-in style meet and greet! Gather with fellow PKD patients and advocates to share your ideas about future meeting topics and what you want out of your local PKD chapter. New members are always welcome!

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 Hamilton Chapter Co-Coordinators, Joy and Jodie, today to find out how you can get involved with the Hamilton Chapter. Visit for more information.

Ensure you are receiving all Hamilton Chapter updates by emailing us a request to add you to the Hamilton Chapter email list! You can also stay up to date by following the chapter on Facebook.


Now Online: The 2017 Canadian PKD Symposium
On November 25, 2017 we held our biennial Canadian PKD Symposium, which included participants from the PKD medical community and various renal healthcare centres, as well as PKD patients, their families and loved ones.
We are excited to share online the presentations from the top Canadian and International Key Opinion Leaders in the field of PKD, to help you learn about important ways to manage various aspects of one's PKD diagnosis.



PKD Health Notes: Tips for PKD Patients on How to Manage Hypertension
High blood pressure, also known as hypertension, affects about 60 to 70 percent of PKD patients and begins early in the course of the disease. Many times, the increase in blood pressure is the first sign of PKD.

The PKD Foundation (USA) Director of Community Engagement and PKD patient, Nicole Harr, weighs in with her experience with hypertension and best practices for managing blood pressure:

"When I was diagnosed with PKD, one of the first conversations I remember having with my nephrologist was how we need to work together to manage hypertension. At that time, my blood pressure was “slightly higher than normal.” My nephrologist wanted to prescribe medication and I wanted to lower my blood pressure by adjusting my diet and increasing my exercise routine. At that time, I was just starting to learn about PKD and the thought of taking a daily blood pressure medication every day was daunting."

Check out the full article with Nicole's tips that help her manage blood pressure and stay as healthy as possible!


PKD-Friendly Recipes: Mexican Layer Dip
Try out this low calorie, simple and delicious recipe for Mexican layer dip that will add some spice to your next weekend!

Nutrition information
Per serving (serves 15):
  • Calories 110
  • Fat 6.7 g
  • Carbohydrates 11 g
  • Protein 4 g
  • Dietary Fiber 4.2 g
  • Calcium 53 mg
  • Phosphorus 88 mg
  • Sodium 66 mg
  • Potassium 347 mg

Remember to consult your doctor or dietitian about what recipes and practices are best for you at your stage of PKD.



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