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

AWARENESS

PKD Foundation of Canada Awarded the Upper Canada Medal

On Monday, April 9, the PKD Foundation of Canada attended the Can-SOLVE CKD SPOR Initiative reception where we were awarded the Pewter Upper Canada Medal from the Toronto General & Western Hospital Foundation for our support of Dr. York Pei’s Hereditary Kidney Disease Clinic at Toronto General Hospital.

We wish to share this prestigious honour with every volunteer and donor who has joined in the fight to end PKD, furthered our mission and helped to advance critical Canadian research of PKD.

History of the medal: The Upper Canada Medal was originally created by the Loyal and Patriotic Society of Upper Canada to provide recognition of distinguished service and bravery to volunteer soldiers in the War of 1812.

Recognizing an even greater need, the Loyal and Patriotic Society decided to reduce the medals to gold bullion for the establishment, in 1829, of the original Toronto General Hospital.

Toronto General & Western Hospital Foundations continue to honour both the original intent of the medals - to recognize distinguished service - and their later role - to support the greater good.

Check out our blog post to read the full description of the Upper Canada Medal. 

Many thanks to the Toronto General & Western Hospital Foundation for this recognition!

Grand Opening of the Scarborough and Rouge Hospital PKD Clinic

On April 4, 2018, we were fortunate to participate in another PKD clinic grand opening: The Scarborough and Rouge Hospital Polycystic Kidney Disease Clinic!

 

The Scarborough Hospital (TSH) is home to the largest Regional Nephrology Program in North America with more than 6,000 patients receiving care. It is one of 26 Regional Chronic Kidney Disease (CKD) programs in Ontario and one of three Regional CKD programs within the Central East Local Health Integration Network (Central East LHIN). Read more about the TSH nephrology program here.

Check out more photos on our Facebook page from the ceremony.

If you missed reading about the Ottawa PKD Clinic grand opening, you can find it in our February e-newsletter on our website.

BLOG: PKD Will Not Beat Me - Liver Transplant Evaluation (Parts 1 & 2)

Going through a transplant evaluation can be a taxing process. On Valen's most recent blog posts, she walks us through her recent experience and shares advice on how to get through it (from Part 1):

 

"“It is going to be intense.” This is how my doctor described going through the liver transplant evaluation process. I had no idea what I was getting into because I didn’t have to go through this when I received my kidney over 15 years ago due to PKD. I was too sick then to be placed on the wait list and I was fortunate to receive a kidney from a living donor. However, I now find myself in a different position with my primary sclerosing cholangitis (PSC) diagnosis. I went from being diagnosed with PSC in October 2017 to being added to the national waitlist on March 6, 2018."

• Read the rest of Part 1.
• Read Part 2.

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.

SUPPORT

Registration is Now Open for the 2018 Bike to the Moon Fundraiser!

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.

 Sign up today!

How do I participate?
Bike to the Moon is an event that is perfect 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!

Upcoming Montreal Chapter Music Heals Benefit Concert

When:

 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.

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!

LEARN

Upcoming Ottawa Chapter Meeting: New Ottawa PKD Clinic - Panel Discussion with the Leading Nephrologists

When:

Tuesday, May 29, 2018
7:00pm - 9:00pm

Ottawa ON K2C 3V8

 RSVP!

Speakers: Dr. Pierre Antoine Brown, Dr. Mohan Biyani, and Dr. Ayub Akbari

 

Meeting Details: The Ottawa Chapter presents the opportunity to hear from the three nephrologists who lead the brand new PKD clinic, the Ottawa Hospital Eastern Ontario Cystic Renal Disease Centre of Excellence! The doctors will share information about resources and services available at this state of the art clinic and answer your questions about PKD.

Check out this article from The Ottawa Hospital that highlights how access to multi-disciplinary expert care at this innovative clinic will improve patient care for those living in eastern Ontario and surrounding areas.

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

 

Upcoming Hamilton Chapter Meeting: Meet & Greet

When:

Thursday, June 14, 2018
6:30pm - 8:30pm

Where:

Williams Fresh Cafe (Bayfront)

47 Discovery Drive

Hamilton, ON L8L 8K4

 

 RSVP!

 

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 endPKD.ca/Hamilton 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.

 

The FDA Approves JYNARQUE™ as the First Treatment in the United States for Adult Patients with ADPKD

We’re excited to announce that on Tuesday, April 24, 2018, the U.S. Food and Drug Administration (FDA) granted approval of JYNARQUE™ (pronounced jin-AR-kew and also known as tolvaptan) to be the first treatment in the United States for adult patients with autosomal dominant polycystic kidney disease (ADPKD), the most common form of polycystic kidney disease (PKD).

• Read the announcement on the PKD Foundation (USA) website.
• Check out the official press release here.
• American residents with questions about JYNARQUE™ can call the PKD Foundation (USA) at 1-800-PKD-CURE
• Interested in reading about Canadian ADPKD treatment options? Check out our own FAQ section.

 

Special JYNARQUE™ Webinar

Learn more about JYNARQUE™ by registering for the PKD Foundation (USA) webinar with Ronald Perrone, M.D., on Monday, April 30.

Register for the webinar here.

 

 

PKD-Friendly Recipes: Chili Lime Shrimp

Shrimp is always a delicious dish, but spicing it up with chili and lime turns it into the perfect entrée with a little zest and a lot of flavor! Try out the recipe here.

Nutrition information

Serves 4 (per serving)

• Calories 95
• Fat 0.8 g
• Carbohydrates 2 g
• Protein 20 g
• Dietary Fiber 0.4 g
• Calcium 67 mg
• Phosphorous 203 mg
• Sodium 105 mg
• Potassium 271 mg

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

 

PKD Health Notes: Knowing the Difference Between Hunger and Thirst

How often have you heard your stomach growl, felt a little light-headed or had an oncoming headache and immediately reached for a snack? You might be surprised to find that what can feel like a hunger pang is actually thirst. These two sensations ride a fine line, and being able to tell the difference can help you be successful with your daily diet!

Check out these tips to help tell the difference!