July 2018 PKD e-News
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.
SUPPORT
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
Upcoming Toronto Walk to END PKD Launch Party
Date: Wednesday, August 29, 2018
From 5:30pm - 9:30pm
Location: Boston Pizza - Yonge and Empress
5170 Yonge Street, Toronto ON M2N 0G1
RSVP: Submit your RSVP here.
This event is always a great opportunity to kick your Walk fundraising efforts into high gear! Bring your friends, family, co-workers and entire Walk Team out for a wonderful night of great food and friends, as we continue to increase awareness of PKD in the local community. Enjoy complimentary food catered by Boston Pizza, enter amazing raffles, and place your bid on our fantastic silent auction items! Visit the event page for full details and to RSVP.
2018 Bike to the Moon Campaign Hits $25,000 Goal!
It has been just over a month since we completed our first Bike to the Moon fundraiser and we are thrilled to share that we reached our record-setting goal of $25,000 for critical Canadian PKD research! Bike to the Moon participants cycled over 4,000 km in communities all across Canada, raising funds for the world-class Hereditary Kidney Disease Program at Toronto General Hospital. Click here to read more.
Thank you to our participants, donors and volunteers for an amazing campaign! You can check out our Bike to the Moon album on Facebook here.
Montreal's Music Heals Benefit Concert Raises $27,000
On June 16, 2018, the PKD Foundation of Canada - Montreal Chapter & Sophisticada Productions hosted another amazingly successful Music Heals Benefit Concert at the Rialto Theatre.
We are proud to share that in its third year, Music Heals raised $27,000! This outstanding growth was accomplished with the generous support of Peter Di Leo, husband to Montreal Chapter Coordinator, Luisa Miniaci-Di Leo, who match-funded an unprecedented $13,500! On behalf of the entire PKD Foundation of Canada, we wish to extend our sincere gratitude to the Di-Leo Family for making this contribution towards Music Heals and the Foundation! Their tireless commitment to improving the care of the PKD community is truly inspiring to see.
View all photos taken by Rik Roe at Music Heals 2018 by visiting the event page on his website.
Golf to End Polycystic Kidney Disease in Barrie, ON
Join the first annual Golf to End Polycystic Kidney Disease hosted by Dean Tremain!
This fun event will be held at Settlers' Ghost Golf Club in scenic Barrie, ON. Have fun and share some laughs all while uniting to raise awareness and funds for critical Canadian PKD research! The format for the day will be a four-person team scramble with some other unique twists and advantages to make the day enjoyable for all skill levels.
To register and learn more about the event click here.
Stay connected on the Facebook event page for Golf to End Polycystic Kidney Disease.
LEARN
New PKD Literature in the Resource Centre
Check out our updated resource centre at endPKD.ca! You can now read and watch a variety of resources including our educational pamphlets and presentations, patient vignettes and the 2017 Canadian PKD Symposium in its entirety.
If there is a clinic in your community that could promote our PKD literature, contact us and we will help facilitate delivery of the materials to them.
PKDF (USA) Staff Member Nicole Harr Shares her Reflection Pre-Transplant
Nicole Harr, Director of Community Engagement at the PKD Foundation (USA), has spent the last two years sharing pieces of her journey as she’s prepared to receive a kidney transplant. Now, as the day of her surgery approaches, she shares her reflections on the journey and her anticipation for the road ahead with the PKD community:
"I have made many adjustments over the last few years to compensate for my failing kidneys and the fatigue that goes along with that. These changes have taken place over time and I realize that I am not completely aware of how “bad” I actually feel. To think about how I will feel after I recover from the surgery is hard for me to visualize. To combat the nerves that keep creeping into my thoughts, I am trying to concentrate on all of the things I want to do that I have been putting off because I just don’t have the energy right now."
PKD Health Notes: Staying Hydrated through the Summer
High vasopressin levels, which occur when we don’t get enough fluid, have been linked to cyst growth in ADPKD. Drinking more fluid can reduce vasopressin and slow the progression of ADPKD, but drinking enough fluid each day can be difficult for patients to maintain in real life.
The PKD Foundation (USA) shares additional points to know about water intake for PKD patients and ways to stay better hydrated.
Please always consult with your health care team if you are planning to make changes to your diet or fitness routine.
10 Simple Things You Can Do to Support Your Favourite Nonprofit
Without spending a single dime!
Check out these ten easy and no-cost ideasthat you can do to support your favourite nonprofit organizations, and they take less than 5 minutes!
AWARENESS
Survey: Standardised Outcomes in Nephrology (SONG)
The Standardised Outcomes in Nephrology (SONG) initiative aims to establish a set of core outcomes and outcome measures across the spectrum of kidney disease for trials and other forms of research. The outcomes will be developed based on the shared priorities of patients, caregivers, clinicians, researchers, policy makers, and relevant stakeholders. This will help to ensure that research is reporting outcomes that are meaningful and relevant to patients with kidney disease, their family, and their clinicians; to support decisions about treatment.
Surveys for the SONG-Kids and SONG-PKD are now open!
Currently, core outcomes are being developed for haemodialysis (SONG-HD), transplantation (SONG-Tx), peritoneal dialysis (SONG-PD) children and adolescents (SONG-Kids), and polycystic kidney disease (SONG-PKD).
Blog: PKD Will Not Beat Me - We're All Human
In Valen's most recent blog post, she confides about the powerful emotions that emerged when she and her husband, Noah, faced missing an important event as a result of her diagnosis, and how she moved through them: