November 08, 2018

October 2018 PKD e-News

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


October is Pregnancy and Infant Loss Remembrance Month


With October being Pregnancy and Infant Loss Remembrance Month, we wish to share with you a heartfelt blog from Melissa Justice, a member of the PKD Community who lost her daughter in 2017.

Read how she honours the life of Abby here.


Can-SOLVE CKD Network is Seeking Participants for Living Kidney Donor Survey

Can-SOLVE.jpgDo you want to help improve the process of becoming a living kidney donor? Can-SOLVE CKD Network researchers are seeking participants to complete a survey as part of a Delphi study looking to improve the evaluation process of potential living kidney donors.

The researchers are asking previous donors to think back and give their insights on their experiences when they were becoming a donor. Understanding the current process of evaluation is the starting point for making the process more efficient and timely in the future.

If you are interested in participating in this one-time study or would simply like more information, please contact Steven Habbous.


Recent Hamilton Chapter Halloween Dance Party - A Great Success

On October 21st, 200+ festively dressed dance-aholics of all ages joined the PKD Foundation of Canada - Hamilton Chapter for their very first and highly successful Halloween Dance Party, in support of critical Canadian PKD research!

Activities included a costume contest, painting with Crock A Doodle, a micro photo shoot with Ten West Photography, and of course balloon animals with Marco the Clown! We even had a guest appearance by the one and only, Stripes from the Hamilton Ticats!

Thanks to the support of our generous sponsors, attendees and volunteers, we are thrilled to announce $8,000 was raised through this incredibly fun event!

A big thank you goes out to Hamilton Chapter Coordinators Joy Pekar and Jodie Brant for their tireless efforts in creating such a memorable event for all involved.


Sanofi Genzyme Begins Pivotal Clinical Trial to Evaluate Therapy for Patients at Risk of Rapidly Progressing ADPKD

Sanofi Genzyme is beginning a pivotal clinical trial to study the safety, efficacy, and tolerability of an investigational oral agent called venglustat for certain patients with ADPKD. The international trial is enrolling patients who are at risk of rapidly progressive ADPKD.

Venglustat is an investigational oral therapy designed to inhibit the abnormal accumulation of a substance in the body called glucosylceramide (GL-1), which plays a role in production of glycosphingolipids. In genetic mouse models of ADPKD, inhibition of glycosphingolipid production has been shown to reduce kidney cyst growth. The clinical significance of this is under investigation.

Venglustat has received Orphan Drug designation in the U.S. for the treatment of ADPKD. The ADPKD clinical trial will be conducted at sites in the U.S., Canada, China and Japan as well as several EU countries.

You can read the full press release here

As more information becomes available on this clinical trial, we will update you ASAP by way of our e-Newsletters, website and social media.


Upcoming PKD Patient Forums in London and Hamilton, Ontario


London PKD Patient Forum

When: Nov. 28 at 6pm-8:30pm

Where: University Hospital - L.H.S.C
Auditorium C, 3rd Floor
339 Windemere Road
London, ON N6A 5A5

Guest Speakers: Dr. Faisal Rehman + Jeff Robertson

RSVP Today!


Hamilton PKD Patient Forum

When: Nov. 29 at 6pm-8:30pm

Where: St. Joseph's Healthcare Hamilton
The Miller Auditorium
50 Charlton Avenue East
Hamilton, ON L8N 4A6

Guest Speakers: Dr. Matt Lanktree and Jeff Robertson

RSVP Today!


Patients and their loved ones are invited to join these forums to:

  • Learn about what a PKD diagnosis can mean for you or a loved one, as well as how PKD can be managed from Dr. Faisal Rehman (London, ON) and Dr. Matt Lanktree (Hamilton, ON);
  • Hear about what resources and support systems are available to you and your loved ones from Jeff Robertson, Executive Director, PKD Foundation of Canada;
  • Have your questions answered during a Q&A period led by Dr. Rehman (London, ON), Dr. Lanktree (Hamilton, ON) and Jeff Robertson; and,
  • Meet other people living with PKD in your community

Please note that registration will begin at 6:00pm and the presentation will start at 6:30pm sharp!

Parking and attendance is FREE, and light food and beverages will be served.

Register Online Today!


PKD Health Notes: Avoiding Halloween Health Hazards


For many, October 31st marks the beginning of holiday eating and many diet temptations. Eating candy is not only for holidays such as Halloween. Sweets are enjoyable all year round. Candy seems to be everywhere, especially now. For people with chronic kidney disease (CKD), who have been told to limit certain things in their daily diets, some candies may be too high in phosphorus, potassium or sodium. But that doesn't mean you shouldn't treat yourself every now and then. There are some candies that are better choices than others. Planning ahead, knowing your labs and setting goals are your best bets to ensure you are starting out the holiday season right.

You can read a few tips to get you started on the track to healthier eating this Halloween here

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

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.