January 2019 PKD e-News
Welcome to the PKD Foundation of Canada's January e-News! We have provided information important to helping you take action in your journey with PKD.
Volunteers Needed! Join the Fight to End PKD Today!
PKD Foundation of Canada chapters and the volunteers who lead them are the backbone of the polycystic kidney disease (PKD) community.
As a small non-profit organization, we pride ourselves in keeping our administration costs low and our impact high. In order to do this, we count on volunteers every day to help drive vital programs and awareness around Canada.
Don't see a chapter near you? Email us to learn about starting a chapter in your local community.
Save the Date: Bike to the Moon 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!
Join us from June 21-24, 2019 to 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!
Stay Tuned for More Info. Online Registration Opens March 15, 2018!
Australia Discovers Breakthrough in Stem Cell Kidney Research
12 year-old Alexandria suffers from Mainzer-Saldino Syndrome, a rare genetic condition causing progressive retinal degeneration and end-stage kidney disease.
Using a skin biopsy, doctors were able to make Alexandria the first patient to have a kidney regenerated from their stem cells in Australia!
"The fact that we can make kidney tissue from human stem cells and then correct any genetic mutations to study the way the disease develops is a very promising step towards developing personalised future treatment,"" said MCRI senior research officer Dr Sara Howden.
Read Alexandria's full story here
Voices of PKD: Trish Chesterman
"I am a young 67-year-old mom and grandmother to a son, daughter and four beautiful grandchildren. I was diagnosed with PKD about 20 years ago.
After years of pain and kidney infections leading up to my young adult years, my left kidney was removed; my kidney function on the right improved. The night before going home from the surgery, I was found unconscious, with a 5-part fracture to my shoulder. Doctors speculate that I had fallen during a possible seizure. I then went home to recover from my two recent surgeries.
Being a widow with two young children, I counted on my parents to care for us during my recovery."
Read Trish's full story here
PKD Treatment Now Covered in Australia
Tolvaptan is currently the only treatment available to slow the development of ADPKD.
Beginning January 1st, patients in Australia will no longer pay the $23 thousand dollars a year for their treatment, but instead will be able to buy their medication for approximately $40.30 a script.
Adding the drug to Australia's Pharmaceutical Benefits Scheme (PBS) means more access to patients who are not covered by private insurance!
PKD Foundation of Canada Establishes York Region Chapter
The PKD Foundation of Canada wishes to welcome the newest chapter into the fold, which will service the York Region and surrounding areas!
Ongoing chapter activities will 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!
If you would like to be added to the York Region Chapter contact list click here.
Let's Get Social!
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Why share? The more you share with your friends and family, the bigger the conversation gets, giving us more chances to change the lives of people with PKD! Help us connect with the PKD community in your area by sharing our social media links below!
Upcoming Montreal Chapter Meetings: Let's Talk Kidneys & How PKD Affects Their Function
February 6th, 2019
From 9:15 AM - 11:15 AM
135, Chemin Haendel, Candiac
Complexe Romeo Patenaude
Join us as The Candiac Women's Group and our Montreal Chapter Coordinator, Luisa Miniaci-Di Leo discuss how the kidneys work and how polycystic kidney disease can compromise normal kidney function.
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
Family, friends, caregivers and new members are always welcome!
Upcoming Calgary Chapter Meeting: What's New in PKD Research
March 7th, 2019
From 6:30 PM - 8:30 PM
Nicholls Family Library
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.
Canadian Institute for Health Information (CIHI) Highlights the Significant Difference Between Dialysis and Transplant
New data from the Canadian Institute for Health Information highlights the significant difference between dialysis and transplant outcomes for those being treated for end-stage kidney disease.
A focused look at 10-year outcome data shows that 16% of Canadians on dialysis survive past 10 years, whereas up to 74% of Canadians with a kidney transplant still have a functioning kidney after 10 years. Outcomes for both kidney transplants and dialysis have been improving over the last decade.
Read the full article here
PKD Friendly Snacks: Apple Muffin Recipe
Looking for quick, healthy and delicious snacks to add to your kidney diet? Try this recipe for sweet apple muffins:
- 2 eggs
- 1 cup Splenda (can substitute in sugar)
- 1/2 cup canola oil
- 1/4 cup water
- 1 tablespoon vanilla
- 1 1/2 cups all-purpose white flour
- 1 teaspoon baking soda
- 1 1/2 teaspoon cinnamon
- 1 3/4 cup raw apple, peeled and cut into small pieces
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.