Welcome to the PKD Foundation of Canada's June e-News! Here you will find information important to helping you take action in your journey with PKD.
The 2018 Walk to END PKD is Open for Online Registration!
The Walk to END PKD signifies a united group, moving towards treatments and a cure for PKD, one of the most common life-threatening genetic diseases affecting thousands in Canada. You can make an impact on this devastating disease by joining a walk event in Montreal, Guelph, Ottawa, or Toronto or by joining the "Virtual" walk location if you do not have an event nearby.
Registration is easy!
Visit endpkd.ca/walk to sign up as a walk participant. You can choose whether you would like to participate as a team or register as an individual. Everyone is invited to sign up and create their own personal fundraising page, where you can join others in the fight to end PKD through interactive message boards and photos!
After registering online, you can take advantage of features like:
- creating a personal fundraising page to track dollars raised
- tools to email family, friends and colleagues
- making your kickoff gift online
Sign up today!
The Great Canadian Giving Challenge: Help us Win $10,000
The Great Canadian Giving Challenge is drawing to an end! Donate to the PKD Foundation of Canada through CanadaHelps.org from now through June 30, 2018 and you will have automatically entered us to win $10,000! The more you give, the more chances we have to win!
Help spread the word! You can also help by sharing our donation page on your social media channels during the month of June using hashtags #GivingChallengeCA and #endPKD!
Click here to donate!
Thank You for Your Support of the 2018 Bike to the Moon
Thank you to our participants, donors and volunteers who helped make the 2018 Bike to the Moon an amazing success! We had participants all across Canada get on their bikes during June 22-25 through rain, shine and even bison! Check out our Bike to the Moon album on Facebook for more photos.
Helps us reach our $25,000 goal!
We are just shy of reaching our $25,000 goal and there's still time to help us get there by making a donation before July 9! Every dollar raised goes directly to critical Canadian PKD research at the world-class Hereditary Kidney Disease Program within Toronto General Hospital.
Donate Your Vehicle to the PKD Foundation of Canada
Thinking about saying goodbye to your used car? Donate your vehicle to the PKD Foundation of Canada! We have partnered with Donate A Car Canada to help you transform that old car into new hope, and it’s tax deductible!
Blog: PKD Will Not Beat Me - Father Daughter Q&A
In honour of Father's Day, Valen's most recent blog post revealed an intimate dialogue with her dad about the impact of PKD on their family:
Valen: How would you describe our family’s path with PKD and how it has affected your life?
Bill: PKD has added a tremendous amount of stress in my life. While PKD has not improved my quality of life, it has improved the quality of me as a person. PKD has taught me an awful lot about caring for and making sacrifices for other people. It has been a matter of learning to make decisions about what the most important thing to do at the time is, and, to this day, still being able to do that.
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.
Upcoming Saskatoon Chapter Meeting: "What's New in PKD Research" Webinar
Sunday, July 8, 2018
3:00 pm to 5:00 pm
University of Saskatchewan
Agriculture Building Room 4D37
51 Campus Drive
Saskatoon, SK S7N 5A8
Meeting Details: Join the Saskatoon Chapter in viewing Dr. Mike Bevilacqua's presentation, What's New in PKD Research, from the 2017 Canadian PKD Symposium! Dr. Bevilacqua MD, FRCP(C), covers the following topics:
- Understanding autosomal dominant PKD;
- Current and pending advancements in diagnostic and prognostic testing;
- Update on treatment option in Canada.
The presentation is one and a half hours long and we will plan a brief intermission midway.
Stay connected on social media by following the Saskatoon Chapter Facebook Page!
Ensure you are receiving all Saskatoon Chapter updates by emailing us a request to add you to the Montreal Chapter email list!
Now Online: The 2017 Canadian PKD Symposium
On November 25, 2017 we held our biennial Canadian PKD Symposium, which included participants from the PKD medical community and various renal healthcare centres, as well as PKD patients, their families and loved ones.
We are excited to share the presentations from the top Canadian and International Key Opinion Leaders in the field of PKD, to help you learn about important ways to manage various aspects of one's PKD diagnosis.
PKD Health Notes: Smartphone Apps to Help PKD Patients Manage Daily Diet and Health
The PKD Foundation (USA) has put together a list of smartphone apps that can track and record important information to help you manage your health on a daily basis. Their Director of Community Engagement, Nicole Harr, has tried each of the apps on this list and provided her own thoughts and recommendations.
Please always consult with your health care team if you are planning to make changes to your diet or fitness routine.
PKD-Friendly Recipes: Artichoke Dip
This artichoke dip recipe
has low sodium, low protein and helps reduce acid in your diet. Give this recipe a try and let us know what you think!
Per serving (serves 10):
- Calories 40
- Fat 2.4 g
- Carbohydrates 4 g
- Protein 1 g
- Dietary Fiber 1.5 g
- Calcium 24 mg
- Phosphorus 31 mg
- Sodium 113 mg
- Potassium 75 mg
Remember to consult your doctor or dietitian about what recipes and practices are best for you at your stage of PKD.
Rare Kidney Diseases Clinic Grand Opening and the Montreal Chapter's Second Science Café
On May 25, the Montreal Clinical Research Institute (IRCM) announced the grand opening of their Rare Kidney Diseases Clinic, and the Montreal Chapter held their second Science Café! This was a fantastic evening with another great panel of experts.
The Rare Kidney Diseases Clinic is housed at the Institute’s Research Centre on Rare and Genetic Diseases in Adults. It will treat patients with various kidney diseases, including polycystic kidney disease, cystinosis, thrombotic microangiopathies, tubulopathies, tubulointerstitial kidney diseases and hereditary glomerulopathies.
Read more about the clinic here
In the News: First of Its Kind PKD Clinic Opens in Surrey, B.C.
The PKD Foundation of Canada attended the grand opening of the new PKD Clinic, led by Dr. Mike Bevilacqua MD, FRCP(C), at the Fraser Health facility on King George Blvd in Surrey, B.C. on May 30, 2018.
"The Polycystic Kidney Disease Clinic uses a team-based approach to care to bring together various health care providers such as nephrologists that specialize in polycystic kidney disease, nurses, dietitians, social workers, and allied health professionals to closely monitor and address the patient’s ongoing health care needs.
The clinic supports patients in the progression of their disease, including the daily challenges of the disease, and helps people stay healthy enough to remain on the active transplant list. The clinic will improve communication between physicians and nephrologists, leading to a more streamlined care journey for patients living with the disease."
Lakeridge Health PKD Clinic Grand Opening in Whitby, Ontario
The PKD Foundation of Canada was also present for the Lakeridge Health PKD Clinic Grand Opening on June 12.
The opening of the Polycystic Kidney Disease (PKD) Clinic at the Whitby Hospital allows people across Durham Region and beyond living with PKD to have access to care and treatment in order to better manage their disease closer to home.
It is wonderful to see another multidisciplinary clinic opening in an under-served community with the goal to improve the quality of life.