August 31, 2018

August 2018 PKD e-News

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


The PKD Awareness Day is Tuesday, September 4

Take the Teal Pledge
Raise your hand if you’re ready to take the Teal Pledge! By taking the pledge, you can become an ambassador to the cause and help us spread the word about PKD Awareness Day.


Go Teal for PKD!
Change your social media profile pictures to go teal for PKD! Visit our website to download images you can use on your Facebook and Twitter accounts, or click here to add our teal #endPKD frame directly to your Facebook profile picture. Let your friends online know you are serious about PKD awareness!

Get Involved
Don't forget to use #PKDAwarenessDay and #endPKD to join the online conversation and check out our campaign page for even more ways to get involved! The more people that know about PKD, the closer we can get to treatments and a cure.

Together, let's raise awareness and end PKD!



PKD Awareness Day: Video Challenge

Are you ready to take on the challenge?
Help spread the word about PKD Awareness Day and what it's like to live with polycystic kidney disease. Record a short video with your smartphone and tell us your story! Submit your videos to the Ottawa Chapter by email or send through a direct message on Facebook. 

Click here to watch the videos we've shared so far!


Facebook Live Event with Ottawa Nephrologist Dr. Brown

When: September 4, 2018
From 12:30pm - 1:30pm

Where: Via the Ottawa Chapter Facebook Page


Event Details:
The Ottawa Chapter will be hosting a Facebook Live Event with Dr. Pierre Antoine Brown, Nephrologist and Medical Director for the Hemodialysis Program and Polycystic Kidney Disease (PKD) Clinic on PKD Awareness Day!
Send your questions about PKD, treatments and more ahead of time by emailor join us during the live event and ask your questions there! Be sure to tune into hear your questions answered.


Corner Brook Chapter's PKD Awareness Day Barbeque

When: September 4, 2018
From 11:30pm - 2:30pm

Western Memorial Regional Hospital 
1 Brookfield Ave
Corner Brook, NL A2H 2X4

RSVP: Submit your RSVP here

The Corner Brook Chapter is hosting a barbeque lunch outside Western Memorial Regional Hospital to celebrate the City of Corner Brook officially declaring September 4, 2018 as Polycystic Kidney Disease (PKD) Awareness Day! We hope you will join us to help raise awareness and funds on this important day.

Barbeque options and pricing:
  • Hamburgers $3
  • Hotdogs $2
  • Pop or water $1
Raffle ticket pricing:
  • $2 each or $5 for three tickets
Bring cash to purchase your meal and to buy raffle tickets for great prizes. We can't wait to see you there! View the event listing here.



Register Your Team for the Walk to END PKD!

The Walk to END PKD signifies a united group, moving towards treatments and a cure for PKD, one of the most common life-threatening genetic diseases affecting thousands in Canada. You can make an impact on this devastating disease by joining a walk event in Montreal, Guelph, Ottawa, or Toronto or by joining the "virtual" walk location if you do not have an event nearby.

Registration is easy!
Visit to sign up as a walk participant. You can choose whether you would like to participate as a team or register as an individual. Everyone is invited to sign up and create their own personal fundraising page, where you can join others in the fight to end PKD through interactive message boards and photos! 


After registering online, you can take advantage of features like:

  • creating a personal fundraising page to track dollars raised
  • tools to email family, friends and colleagues
  • making your kickoff gift online

 Sign up today!


Upcoming Calgary Chapter Meeting: Patient Support Group

When:  September 26, 2018
From 6:30pm - 8:30pm

Nicholls Family Library
1421 33 St SW
Calgary, AB T3C 1P2

RSVP: Submit your RSVP here.

Gather with local PKD patients and advocates to share your PKD journey, gain insight from the experience of others and help shape future chapter meetings. Coffee and light snacks will be served.
Ongoing chapter activities include:
  • Educational meetings
  • Support groups & socials
  • Increasing awareness of PKD
  • Local fundraising events
View the event listing here. Family, friends, caregivers and new members are always welcome!


Upcoming Hamilton Chapter Halloween Dance Party

When:  September 26, 2018
From 6:30pm - 8:30pm

Hamilton Air Force Association
128 King St E
Dundas, ON L9H 1N5

RSVP: Submit your RSVP here.

Join us for Halloween fun with the Hamilton Chapter! Come for a family-friendly Halloween dance party complete with DJ, silent auction, 50/50 costume contest and activities for the kids!

Admission Info
Tickets available through the Hamilton Chapter Coordinators or at the door.

  • $10 per ticket - includes one pizza slice.
  • $35 per family - includes up to six pizza slices.

Admission also includes an apple for each person and a Halloween treat! Additional pizza, refreshments and spirits can be purchased at the bar. View the event listing here.


Upcoming Toronto Chapter Meeting: Challenge, Change & Choice - Incidental Findings on the Road Trip of Life

When:  October 28, 2018
From 2:00pm - 4:00pm

North York Civic Centre
Committee Room #1
5100 Yonge St
North York, ON M2N 5V7

RSVP: Submit your RSVP here.

Join the Toronto Chapter as Sandee Sharpe presents Challenge, Change & Choice, a description of her ongoing PKD journey as she continues to seek out Western advances in treatment and holistic approaches to overall health.

In this session, Sandee will share her recent experiences with:

  • Three rounds of sclerotherapy
  • Fourteen-day test trial for Octreotide, followed by 15 months on Sandostatin
  • Those incidental (completely unexpected) findings - some out of the blue, and some related to PKD that I had never heard discussed before, so let's bring them out into the open.
Let’s navigate our journey together with insight and humour while sharing our combined ideas for effective techniques to improved health.
View the event listing here, complete with the speaker's biography. Family, friends, caregivers and new members are always welcome!



University Health Network's 2018 Toronto PKD Scientific Conference

When:  September 14 & 15, 2018

Chestnut Residence & Conference Centre
89 Chestnut St
Toronto, ON M5G 2R1

RSVP: Submit your RSVP by email here.

This is a two-day event through the University Health Network (UHN). View the list of faculty speakers and complete event outline here (pdf).
Educational Objectives
  • Highlight recent advances of basic and clinical research in ADPKD
  • Illustrate how this knowledge is being translated into improving risk prognostication and novel therapeutics in ADPKD
  • Provide practical guidance on risk assessment and and clinical management of ADPKD through interactive case studies
There is a registration fee of $150 for nephrologists. No registration fee for allied health professionals, students or patients. Submit your RSVP to Ji Lee by email at Ji.Lee @ to reserve your spot.


Survey: Standardised Outcomes in Nephrology (SONG)

Dialysis-HomePage_SONG_PKD.jpgThe Standardised Outcomes in Nephrology (SONG) initiative aims to establish a set of core outcomes and outcome measures across the spectrum of kidney disease for trials and other forms of research. The outcomes will be developed based on the shared priorities of patients, caregivers, clinicians, researchers, policy makers, and relevant stakeholders. This will help to ensure that research is reporting outcomes that are meaningful and relevant to patients with kidney disease, their family, and their clinicians; to support decisions about treatment.

Surveys for the SONG-Kids and SONG-PKD are now open!

Currently, core outcomes are being developed for haemodialysis (SONG-HD), transplantation (SONG-Tx), peritoneal dialysis (SONG-PD) children and adolescents (SONG-Kids), and polycystic kidney disease (SONG-PKD).


Grand Opening of the First PKD Clinic in BC on Video

On May 30, the PKD Foundation of Canada attended the grand opening of Surrey's new PKD Clinic, led by Dr. Mike Bevilacqua MD, FRCP(C), at the Fraser Health facility on King George Blvd in Surrey, B.C.

Check out the guest appearances by Executive Director Jeff Robertson and Vancouver Chapter Coordinator Elyse Gawley on PluggedIn to celebrate the grand opening!


PluggedIn is the Kidney Foundation BC & Yukon Branch's educational TV show. You can catch up on episodes here.


PKD Health Notes: Healthy Eating Habits for Children with PKD

Children with kidney disease have special dietary needs. When the kidneys are not working well, they may not be able to get rid of waste products from foods in the diet. It’s that build-up of waste that often compromises a child’s growth. What can help improve growth? The right balance of nutrients and calories. 

Check out this blog post from the PKD Foundation (USA) for information and tips for developing healthy eating habits for children.


Please always consult with your health care team if you are planning to make changes to your diet or fitness routine.


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