December 2018 PKD e-News
Welcome to the PKD Foundation of Canada's December e-News! We have provided information important to helping you take action in your journey with PKD.
There's Still Time to Make Your Year-End Charitable Contribution!
Season's greetings to you and yours!
With 2018 drawing to a close, we hope you remember the PKD Foundation of Canada in your holiday plans and consider making a year-end gift to help advance Canadian research, advocacy and support for more PKD patients and their loved ones.
Hailey-Ann is a vivacious 4.5 year-old girl who loves life. The diagnosis of autosomal dominant polycystic kidney disease (ADPKD) was confirmed when she was only 6 months old through genetic testing. Hailey-Ann has severely enlarged kidneys with current measurements of approximately 13cm each. Presently doctors believe that she will need a kidney transplant in late childhood.
"As a family raising a child with PKD, we face a lot of additional struggles. There is a lot of anxiety around what her future holds. We feel it is so important to support and share our story with the PKD Foundation of Canada and PKD community to help raise awareness to the fact that PKD exists, and that children can be affected by ADPKD in addition to adults. My hope for her future is that she is able to see her dreams come true and live a healthy life. It is our number one hope for all PKD patients that we discover a cure in our lifetime.”
- Kristina Cook, Hailey-Ann's Mom and PKD advocate.
Read Hailey-Ann's full story written by her Mom, Kristina, below in our Voices of PKD section.
Send Your Loved One a PKD Holiday Card This Year!
When making your online donation, simply provide your honouree's contact information to ensure they receive a card from us letting them know a gift has been made in their honour.
Support the PKD Foundation of Canada Through Vehicle Donations
Is a new car on your wish list this year?
You can make a positive impact in the lives of those affected by PKD by donating your car, truck, boat, motorcycle, or motor home to the PKD Foundation of Canada.
Our partnership with Donation-a-Car Canada follows a simple process that will save you precious time (because you won't have to sell your vehicle yourself), and the proceeds from the sale will directly benefit our focus on finding treatments and a cure for polycystic kidney disease.
Click here to begin your donation process.
Introducing Our New Foundation Coordinator
The PKD Foundation of Canada is pleased to announce that Chelsea Budgell has joined our team as the Foundation Coordinator.
The Foundation Coordinator ensures the efficient day-to-day operation of the office, and supports the work of the Executive Director together through a wide range of duties, which includes ensuring that our donors, volunteers and PKD patients receive the support and information they need from the Foundation. She brings years of non-profit expertise from her previous work with the Ontario SPCA and the L'Arche Canada Foundation.
Chelsea is excited to build relationships within the PKD community and to help the Foundation grow on a National level.
Voices of PKD: Kristina Grant
Hailey-Ann is a vivacious 4.5 year-old girl who loves life. When I was only 21-weeks pregnant with her, my pregnancy went from one of joy and wonder to one of fear and uncertainty. That is because at my 21-week ultrasound with our high-risk team they discovered that my unborn child would be born with kidney disease. The team instantly suspected that she had polycystic kidney disease due to her dad and grandma having the condition, as well as numerous extended family members. The diagnosis of autosomal dominant polycystic kidney disease (ADPKD) was confirmed when she was only 6 months old through genetic testing. She doesn’t present in the typical ADPKD fashion and instead her PKD more closely resembles the autosomal recessive form of the disease.
Read Kristina's full story about Hailey-Ann here.
PKD Foundation of Canada Establishes York Region Chapter
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!
Contact us today to find out how you can get involved.
If you would like to be added to the York Region Chapter contact list contact us here.
Recent PKD Patient Forums a Great Success
With over 50 in attendance in London and over 30 in Hamilton, our most recent PKD Patient Forums were our most successful yet!
Patients and their loved ones in attendance had the opportunity to:
- Learn about what a PKD diagnosis can mean for them or their loved ones, as well as how PKD can be managed
- Hear about what resources and support systems are available from the PKD Foundation of Canada;
- Have their questions answered during a Q&A period
Patient Forum's held by PKD Foundation of Canada include information and resources on PKD and are open to patients, family, caregivers, health professionals and anyone else affected by PKD.
Thank you to Dr. Rehman, Dr. Moist and Dr. Lanktree for sharing their knowledge and insights on PKD and for their support of the PKD Foundation of Canada.
For more information on our upcoming events, click here.
Dr. Faisal Rehman speaking about ADPKD at the London PKD Patient Forum
Dr. Louise Moist discussing advancements in research and treatment options at the London PKD Patient Forum
Dr. Matthew Lanktree representing St. Joseph's Healthcare Hamilton at the Hamilton PKD Patient Forum
Upcoming Montreal Chapter Meeting: Kidneys: Their Function and The Effects of PKD
February 6th, 2019
From 9:15 AM - 11:15 AM
Complexe Romeo Patenaude
135, Chemin Haendel, Candiac
Join us as The Candiac Women's Group and our Montreal Chapter Coordinator, Luisa Miniaci-DeLeo 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
View the event listing on our website for full details
PKD Health Notes: Immunity-Boosting Foods
The winter season brings much to look forward to: holidays, time with family, snow. What’s not nearly as fun? Getting sick.
Scientists have found that when someone is sick within your same vicinity (home or office for example), it takes only 4 hours for surfaces like the refrigerator door, toilet handle, door handles, TV remote, copy machine, etc. to show traces of the infectious virus.
Some scientists also claim that what we eat may influence how well our immune systems are able to fight off the common cold and flu. Check out the list of nutrient-rich flu-fighters listed in this article to help ward off sickness this season.
Watch the UHN 2018 Toronto PKD Scientific Conference Videos
This past September, the University Health Network held a two-day PKD Scientific Conference to:
- Highlight recent research advances in ADPKD;
- Illustrate how this knowledge is being translated into improving risk prognostication and novel therapeutics in ADPKD; and
- Provide practical guidance on risk assessment and clinical management of ADPKD through interactive case studies.
Click here to watch the presentations from this two-day event!
Updated Canadian Expert Consensus on ADPKD Now Published
This year, the Canadian Journal of Kidney Health and Disease published an update to the previously published Canadian Expert Consensus on ADPKD recommendations from March 2017. This document focuses on recent developments in genetic testing, renal imaging, assessment of risk regarding disease progression, and pharmacological treatment options for ADPKD.
“This is a very exciting and hopeful time in ADPCKD care." says Dr. Janet Roscoe, Nephrologist and Director of the Home Hemodialysis Unit at The Scarborough Hospital. "For the first time since the introduction of effective blood pressure medications we have a treatment that can add years of dialysis free life to persons affected by ADPCKD. It is essential that these clients be referred to nephrologists and clinics who are experts in treating the disease as early as possible after diagnosis in order to obtain maximum benefit.”
Click here for more information on the updated Canadian expert consensus.
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.