May 2019 PKD e-News
May 2019
Greetings!
Welcome to the PKD Foundation of Canada's May e-News! We have provided information important to helping you take action in your journey with PKD.
Awareness
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!
Voices of PKD: Sarah Latonas, Edmonton AB
"My name is Sarah and I am a marathon runner and Ironman triathlete. I ran my first road race when I was ten years old, but only got into running more seriously in grade twelve when I decided to train for a half marathon. I ran my first marathon two years later and then began competing in triathlon for the added challenge, eventually working my way up to the full Ironman distance (swim 3.8km, bike 180km, run 42.2km). By the start of this year I had run twenty-six marathons, including the Boston Marathon, and had completed thirteen full Ironman races, including the Ironman World Championship in Kona. I had also competed at the Ironman 70.3 World Championship twice."
Read Sarah's full story here, which details how she pursued completing 30 marathons by the age of 30 and raised over $6,000 for the PKD Foundation of Canada through her "30 By 30 Challenge" in the process!
Support
Upcoming Montreal Chapter Event - Get Your Tickets Today!
When:
Sunday, May 26 2019
Doors open at 1:30pm
Show starts at 2:30pm
Where:
Théâtre Rialto
5723 Avenue du Parc
Montréal, QC H2V 4G9
The 4th Annual Music Heals Benefit Concert will be held on the evening of Sunday, May 26! Presented by the Montreal Chapter and Cathy Pimentel, 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 Théâtre 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!
2019 Bike to the Moon - Registration is OPEN!
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!
Last year, more than 40 Bike to the Moon participants across Canada traveled over 4,000km and raised over $25,000 for the world-class Hereditary Kidney Disease Program at Toronto General Hospital!
You can have an impact on those affected by this disease! Join the PKD community by creating an online fundraising page where you can join others in the fight to end PKD through interactive message boards and photos!
Click here to register and start fundraising today!
Save the Date: Friday July 5th - 2nd Annual Golf to END PKD in Hamilton, ON
This fun event will be held at Dragon's Fire Golf Club in scenic Flamborough (Hamilton), Ontario. The goal for the day is to have fun and share some laughs, all while we unite to raise awareness and funds for critical Canadian research through the PKD Foundation of Canada. The format of the day will be a 4-person team scramble with some other unique twists and advantages to make the day enjoyable for all skill levels.
Register as a foursome for only $650, which includes practice range, 18 holes of golf with a cart, lunch, dinner and prizes! For those who would like to participate as a single, that can easily be done for $175 and we will get you paired up with other players making it stress-free for you.
Bring your friends, family and co-workers out for this incredible event and help make a difference in the lives of the PKD community while having a great time!
For more information on this event, click here .
Learn
Upcoming Vancouver PKD Patient Forum - June 13th 2019
When: Thursday, June 13 2019 at 6pm-8:30pm
Where: Vancouver Marriott Pinnacle Downtown Hotel, Ambleside Room
Guest Speakers: Dr. Mike Bevilacqua + Jeff Robertson
Patients and their loved ones are invited to join this forum 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. Bevilacqua, MD, FRCPC, MHA, CHE. Nephrologist; Fraser Health Authority, BC Renal Agency and Clinical Assistant Professor, Division of Nephrology at UBC
- 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. Bevilacqua 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!
Light food and beverages will be served.
For more information, visit the event page on our website here .
Upcoming Ottawa PKD Patient Forum - June 26th 2019
When: Wednesday, June 26th 2019 at 6:00pm-8:30pm
Where: Ottawa Hospital Riverside Campus, Riverside Amphitheater
Guest Speakers: Dr. Pierre Brown + Jeff Robertson
Patients and their loved ones are invited to join this forum 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. Pierre Brown, Nephrologist, Medical Director, Hemodialysis Program and Polycystic Kidney Disease Clinic - The Ottawa Hospital.
- 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. Brown 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!
Light food & beverages will be served, and parking will be compensated.
For more information, visit the event page on our website here.
Depression: the Overlooked Complication of Kidney Disease
"Living with chronic kidney disease and kidney failure can take a toll on not only your physical health, but your mental health, too. Many patients express feeling hopeless and helpless as their kidneys stop working. Although it may not be spoken about as much as other complications, depression is very common among people with kidney disease.
But struggling with depression does not need to be every kidney patient’s reality. Treatments are available for depression, and there are proven ways of coping with and managing the disease. One of the first steps towards better mental health is knowing the signs of depression, and being able to spot it in yourself or others."
You can read the full article here.
PKD Health Note
The American Kidney Fund is happy to give you a glimpse into a new beta version of their website focused on healthy eating – Kidney Kitchen!
Learn what healthy eating means when you have kidney disease. Check out basic cooking techniques here and try out all kinds of easy and exciting kidney-friendly recipes.
The Ministry of Health and Long -Term Care Eliminated Out of Province Claims
On May 1st, the Ministry of Health and Long -Term Care eliminated Out of Province claims, which will impact hemodialysis patients who may need to travel out of country.
Unfortunately, there are currently no insurance companies in Ontario that have agreed to cover expenses incurred for travelers outside of Canada who require hemodialysis treatments because of a pre-existing condition.
While this legislation passed on May 1st, we can still stand together to make our voice heard. Please take action by speaking with your MPP and share your concerns about how the proposed changes will affect you. To find out who your MPP is and how to contact them, click 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.