November 2017 PKD e-News
Welcome to the PKD Foundation of Canada's November e-News! Here you will find information important to helping you take action in your journey with PKD.
On November 28, #GivingTuesday kicked off the charitable season when many focus on their holiday and end-of-year giving. This global day of giving is celebrated on the Tuesday following American Thanksgiving, and the widely recognized shopping events Black Friday and Cyber Monday.
The #UNselfie was one way we were able to share what causes we care about on GivingTuesday. Check out the more #UNselfies captured at our Canadian PKD Sympoisum on November 25 on Facebook.
There's still time to show your support by making a donation for #GivingTuesday to the PKD Foundation of Canada. Every dollar raised makes a positive impact in the lives of the 66,000 Canadians and 12.5 million people worldwide affected by PKD.
Learn more about #GivingTuesday and make your donation online at endpkd.ca/GivingTuesday.
2017 Canadian PKD Symposium Wrap-Up
On Saturday, November 25th, members of the PKD community and their loved ones, along with medical professionals from across Canada, joined together for a day filled with educational and insightful information related to PKD.
Over the course of the day, Dr. Phil McFarlane, MD, FRCP(C), nephrologist at St. Michael's Hospital, guided us through presentations by:
- Dr. Lisa Guay-Woodford, MD, Hudson Professor of Pediatrics, Associate VP for Clinical and Translational Research at the George Washington University, who shared information about both autosomal recessive PKD and autosomal dominant PKD in children;
- Dr. Micheli Bevilacqua, MD, FRCP(C), nephrologist with the Fraser Health Authority, BC Renal Agency Clinical Assistant Professor, Division of Nephrology at UBC, who brought us up to date on new developments in PKD research; and,
- Ms. Kelly Welsh, registered and certified dietitian and PKD patient, whose presentation focused on the renal-friendly diet and lifestyle.
See photos from the symposium on our Facebook page. In the coming weeks, we will be providing access to the full presentations on our website. Stay tuned for more information!
Many thanks to those who joined us for the 2017 Canadian PKD Symposium. We're already looking forward to 2019's event!
Introducing "Voices of PKD"
Voices of PKD is a collection of stories, testimonies and photos that tell the story of PKD through the eyes of the PKD community. Help give a voice to a widely unknown disease by sharing your story through the link below. Your experiences can paint a powerful picture of what it’s like to live with PKD and help others know they are not alone.
Voices of PKD: Theresa Gray-Gunn
"My name is Theresa Gray-Gunn. In 1968, my Dad passed away from a brain aneurysm. My Mom was brave enough to donate his body to science for research and that is when they discovered that his aneurysm was caused by PKD. Four of his five children, including myself, have been diagnosed with PKD. We are all living with effects of this disease. My one sister underwent brain surgery in 2012 to clip three aneurysms and I had a kidney transplant in 2013 (kidney donated by our younger sister). It is a terrible disease; however, I am choosing to live each day as best I can. My four-year post transplant goal was to run the Scotiabank Toronto Waterfront Half Marathon to raise awareness and honor my gift of life. I did complete the 21 km half marathon on October 22 with my husband and biggest supporter by my side. I encourage everyone with PKD to continue to live, laugh, and love each and every day. Set goals and challenge yourself! We have to find a cure…A cure is our finish line!"
Montreal Chapter Hosts First Science Café: Perspectives on PKD
The Montreal Chapter held an educational meeting earlier this month featuring local experts from the Royal Victoria Hospital, Institut de recherches cliniques de Montréal (IRCM), McGill University and Concordia University; highlighting the close reality of PKD and the strengths of the local community. There were presentations from the perspective of a patient living with PKD, a nephrologist caring for them, and the scientists carrying out PKD research.
Thank you to the Italian Cultural Institute and Dr. Chiara Gamberi of Concordia University for co-hosting this highly successful event.
Check out more photos from the evening on Facebook.
BLOG: PKD Will Not Beat Me - A Positive Heart
This month in Valen's blog, Valen shares the ways she keeps moving forward through challenging times. Recently, she had a custom tire cover made to help increase awareness about organ donation:
"I recently created a unique way to connect and raise awareness. I’ve had an END PKD license plate for seven years and wanted to expand on being a driving billboard for causes near and dear to me. When you are a registered organ donor in California, a pink donor dot is embedded on your driver’s license, so I had a custom tire cover made with the pink donor dot on it."
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.
REPRISE Study Results and Expert Reactions
On November 4, Otsuka announced results from their Phase 3 REPRISE trial of tolvaptan in patients with autosomal dominant PKD. This data was presented at the American Society of Nephrology (ASN) Conference in New Orleans and published online in the New England Journal of Medicine.
The REPRISE study was conducted in late-stage ADPKD patients with chronic kidney disease as part of the tolvaptan clinical development program. It enrolled over 1,300 patients from 213 centres across 21 countries, including 6 centres in Canada. Tolvaptan has been approved in Canada since February 2015 and now further data is available on the treatment.
Canadian nephrologists Dr. Louis Girard, Dr. Daniel Bichet and Dr. Daniel Sapir comment on the REPRISE Phase 3 results for tolvaptan straight from the ASN. Their expert reactions can be watched via UKidney.com.
Webinar: Tolvaptan Clinical Trial Results (REPRISE Phase 3)
Learn the latest about the REPRISE (tolvaptan) clinical trial results from Ron Perrone, M.D., nephrologist at Tufts University and long-standing member of the PKD Foundation’s Scientific Advisory Committee (SAC). Dr. Perrone is joined by Terry Watnick, M.D., member of both the Foundation’s SAC and Board of Trustees.
PKD Health Notes: How to Be a Phosphorous Detective
Part of a kidney-healthy diet is tracking or avoiding minerals like sodium, potassium or phosphorous. Phosphorous is tricky because it can be hidden in foods.
Why is watching phosphorus important? Your body needs some to stay healthy. But too much phosphorous in your blood pulls calcium from your bones, weakening them. That calcium goes to other parts of the body, causing serious health conditions.
Read the full article from the National Kidney Foundation to find tips that will help you limit your phosphorus intake and for a list of lower phosphorus foods.