February 2019 PKD e-News
February 2019
Greetings!
Welcome to the PKD Foundation of Canada's February e-News! We have provided information important to helping you take action in your journey with PKD.
Awareness
March is National Kidney Month!
Kidney Month is recognized in March across Canada and the United States. We spend this time raising awareness of the importance of our kidneys to our overall health, and to reduce the frequency and impact kidney disease and its associated health problems have on an international level.
In honor of March's National Kidney Month, we are taking on daily challenges to raise awareness of polycystic kidney disease (PKD). Participate in the 31 Days of PKD Challenges! Follow along on Facebook, Twitter and Instagram for daily updates on our progress and share your progress with us, using #PKDChallenge, #kidneymonth and #endPKD
For an overview of the entire month's campaign, click here.
Save The Date: March 14 is World Kidney Day
As part of National Kidney Month in March, World Kidney Day is a global awareness campaign aimed at raising awareness of the importance on our kidneys.
This year, World Kidney Day sets out to raise awareness of the high and increasing burden of kidney diseases worldwide and the need for strategies for prevention and management.
'Kidney Health for Everyone Everywhere' calls for universal health coverage for prevention and early treatment of kidney disease.The ultimate goal of the policy is to promote population health by ensuring universal, sustainable and equitable access to essential healthcare of high quality, protecting people from health impoverishment and improving equity in health across socioeconomic groups.
To learn more about World Kidney Day, visit their website here.
National Organ & Tissue Donation Awareness Week is April 21-27, 2019
Approximately 4,500 Canadians are waiting for a lifesaving organ transplant and many more are waiting for tissue transplants. The sad reality is that on average, 250 Canadians die each year waiting.
National Organ and Tissue Donation Awareness Week raises awareness about the critical need for more organ donors across the country. This week encourages Canadians to register to become an organ donor and to talk to their loved ones about organ donation.
Visit organtissuedonation.ca to learn how you can register to become an organ donor in your province or territory today!
Voices of PKD: Anastacia Woitowich, London ON
"My name is Anastacia, and I am a 22 year old young woman. I, along with my mother and older brother, have ADPKD. My mother was diagnosed with ADPKD when she was 24 years old, shortly after I was born. Due to my mother's adoption, she knew nothing of her family history and the doctors have been treating her as if she were the first in our line. I was diagnosed with ADPKD at 4 years old, after chronic bladder infections. My mother had told the doctors that she had PKD and requested that I be tested as well. After my positive diagnosis, my mom requested that my brother also be tested. He too was diagnosed with PKD."
Read Anastacia's full story here
70 Year-Old Man From England Celebrates 50th Anniversary of Kidney Transplant
It's been 50 years since the world's longest surviving kidney transplant patient had his operation. Harry Turner, now 70, has smashed life expectancy rates after he was predicted to only live an additional 16 years.
He had received a kidney from older brother, Victor in 1969. Sadly Victor passed away when he was just 39 from a heart attack but Harry said he would always be grateful to his sibling.
Harry said: "I was 20 when I had my transplant. My two kidneys had packed up and were diseased. My weight had gone up to almost 20 stone because I was full of fluid. My brother, Victor, kindly gave me his kidney and it has worked ever since."
Read Harry's full story here
Louisiana Woman Needs Double Transplant to Survive
Krista Johnson is one out of more than 100,000 patients on the transplant waiting list in the United States, of which 95 percent need a kidney or liver. She needs both.
In September, she came down with a fever and experienced back pain along with big black bruises. Her mother, Linda, took her to the doctor, both thinking Krista just overworked herself.
Krista was diagnosed with congenital hepatic fibrosis, a rare disease that is present at birth and affects the liver. She was also diagnosed with autosomal recessive polycystic kidney disease, an inherited disease where cysts form on the kidneys, leading to failure.
Read Krista's full story here
Support
Save the Date: Bike to the Moon - June 21-24, 2019
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!
Online registration opens March 15th, 2019!
For additional details click here
Learn
Upcoming Calgary Chapter Meeting: What's New in PKD Research
When
March 7, 2019
From 6:30 PM - 8:30 PM
Where
Nicholls Family Library
Upper Level Meeting Room
1421 33 St SW
Calgary, AB T3C 1P2
Speaker: Dr. Louis Girard, Nephrologist, University of Calgary
Dr. Louis Girard is a nephrologist, co-author of the Canadian Expert Consensus and clinical associate professor at the University of Calgary.
Meeting Details: Join us as Dr. Girard walks us through updates on current and pending advancements in clinical research for autosomal dominant polycystic kidney disease (ADPKD).
Family, friends, caregivers & new members are always welcome!
View the event listing on our website for full details.
Upcoming Hamilton Chapter Meeting: New Treatments Being Studied for ADPKD
When
March 28, 2019
From 7:00 PM - 8:30 PM
Where
St. Joseph's Healthcare Hamilton
The Campbell Auditorium
50 Charlton Ave E
Hamilton, ON L8N 4A6
Speaker: Dr. Matthew Lanktree, Nephrologist, St. Joseph's Healthcare Hamilton
Meeting Details: Join us as Dr. Matthew Lanktree talks about the ideas behind new treatments proposed to treat ADPKD, none of which are currently available for clinical use.
Parking for a fee available on-site, with free parking available off-site (side streets).
Coffee, tea and muffins will be served.
Family, friends, caregivers and new members are always welcome!
View the event listing on our website for full details.
Upcoming Montreal Chapter Meeting: Staples Business Depot's "Spotlight" Presentation
When
March 30, 2019
From 6:30 PM - 8:30 PM
Where
Bureau en Gros in Quebec
16908 Transcanadienn
Kirkland, QC H9H 0C5
Join us as the Bureau en Gros in Quebec-Kirkland branch, shines a spotlight on the efforts being made by our Montreal Chapter.
Volunteer Chapter Coordinator, Luisa Miniaci-Di Leo will discuss how the kidneys work and how polycystic kidney disease (PKD) can compromise normal kidney function.
This meeting is open to all those who are interested. We hope to see you there!
During the presentation, Luisa will highlight:
- What the kidneys do
- 10 common habits that can damage kidneys
- What PKD is
- Symptoms of PKD
- Options for prolonging one's quality of life
- The PKD Foundation of Canada & the Montreal Chapter, and the services they provide
View the event listing on our website for full details.
View the event listing en français on our French website for full details.
New Apps Help PKD Patients Manage Daily Diet & Health
There’s an app for everything these days! Why not use an app to help make the best nutrition choices while shopping at the grocery store and track important information for disease management?
The U.S. PKD Foundation's Director of Community Engagement, Nicole Harr, uses an app to organize her recipes, keeping all of her favorite recipes at her fingertips when she shops. Lately, Nicole has been trying out other apps to help her track nutrition needs and more as she manages living with PKD.
Click here for her thoughts on the apps.
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.