June 2019
Greetings!
Welcome to the PKD Foundation of Canada's June e-News! We have provided information important to helping you take action in your journey with PKD.
Awareness
Help People SEE ADPKD: Share Your Story Today!
Share your story!
Polycystic kidney disease (PKD) is one of the world’s most common, life-threatening genetic diseases. Your stories can help people paint a more powerful picture of PKD and the lives it affects.
Help give a voice to a widely unknown disease by sharing your story here.
You can read some of our Voices of PKD here!
Voices of PKD: Willie Van Dyk, Beamsville ON
When I was around the age of 35 (1996) I was diagnosed with polycystic kidney disease (PKD). Being that I was diagnosed while I was still in the early stages, it did not really affect my day to day living. It was not until about 7-10 years later that I started to develop high blood pressure that needed medication to control.
As years went on, we were still able to travel and enjoy our outings with our three children, and then later as two of our children got married, the grandkids. As my kidney function started to decline more and more, fatigue started to set in. My grandkids were quite young at the time and really didn’t understand why their grandpa couldn’t play outdoor games with them anymore like he used to be able to. In August 2015, it was decided to put a fistula in my arm, knowing that I would need dialysis before I could have a kidney transplant.
Read Willie's full story
here,
which details how his family greatly supported him during his kidney transplant, and how this experience is helping him to share his story, raise funds for the PKD Foundation of Canada and raise awareness for PKD and organ donation.
Share your story!
September 4 is PKD Awareness Day
PKD affects thousands in Canada and millions worldwide, many people have never heard of it. Together, we can change this! #PKDAwarenessDay is our day to raise awareness about this disease and the devastating impact it has on generation after generation.
There's not just one single way to raise awareness. You can spread the word in whatever way or format that works for you. Share your story with someone, wear your #endPKD t-shirt, change your Facebook profile picture, tweet your favorite celebrity or local politician, post a video... it's all up to you! Check out this video we created especially for this day. Feel free to share it with your friends, family and co-workers to help them better understand life with PKD.
Don't forget to use #PKDAwarenessDay and #endPKD to join the online conversation. The more people that know about PKD, the closer we can get to treatments and a cure. Together, let's raise awareness and end PKD!
Here are some additional ways you can get involved:
LEARN - Get accurate and clear information about polycystic kidney disease on our website here. Be sure to also remind your friends and family about PKD Awareness Day and share our Facebook, Twitter and Instagram pages with them.
VOLUNTEER - The PKD Foundation of Canada needs volunteers, including healthcare professionals, of all ages and interests. Learn more here.
DONATE - One of the most powerful ways you can be a part of PKD Awareness Day is by making a gift today. Your contribution will support our front line mission to promote programs of research, education, awareness, support and advocacy, in order to discover treatments and a cure for PKD. Click here to make your tax deductible gift online today! Alternatively, to make a donation by mail, please send your contribution to:
The PKD Foundation of Canada
3-1750 The Queensway, Suite 158
Etobicoke ON M9C 5H5
SECURE YOUR LOCAL TOWN OR CITY'S PROCLAMATIONS - Take the TEAL PLEDGE to help us secure proclamations in your city or town! Alternatively, you can email us here or call us at
1-877-410-1741
Support
Registration is Now Open for the 2019 Walk to END PKD Campaign!
The Walk to END PKD signifies a united group, moving towards treatment and a cure for PKD, one of the most common life-threatening genetic diseases affecting thousands in Canada.
You can have an impact on all those affected by this disease by joining one of our walks and by creating an online fundraising page where you can join others in the fight to end PKD through interactive message boards and photos!
Registration is easy!
Click here to find a Walk to END PKD event near you! Choose whether you would like to participate as a team or register as an individual. For information on the Walk to END PKD in French, visit our website.
 
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GUELPH, ON
September 8
Riverside Park, Large Pavilion
709 Woolwich Street
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OTTAWA, ON
September 21
Andrew Haydon Park
3169 Carling Ave, Nepean
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MONTREAL, QC
September 22
Centennial Park, 3000 Lake Street
Dollard Des Ormeaux
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TORONTO, ON
September 29
Centennial Park, Picnic Area 6 & 7
575 Centennial Park Boulevard, Etobicoke
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Why Walk? The Walk to END PKD is the PKD Foundation of Canada's signature fundraising event, raising more than $1,365,000 since 2007. This has helped move us closer to finding treatments. The money also helps provide education and support services, both online and in local communities.
We've made great strides but need your help in keeping the momentum going. We know we can exceed the $175,000 raised last year by recruiting more participants and engaging every walker in fundraising. With your help, we can look forward to a time when no one will have to suffer the full effects of PKD. Register today and help us END PKD!
Even if you are unable to attend the Walk to END PKD or don't have an event in your area, you can still make an incredible impact in raising awareness and funds for critical PKD research! By making a personal donation or by creating your own personal fundraising page, your efforts will help strengthen the direct funding of the PKD Foundation of Canada's mission to promote programs of research, advocacy, education, support and awareness in order to discover treatments and cure for PKD and improve the lives of all it affects!
Remember - every dollar raised brings us that much closer to the ultimate finish line: A cure for PKD!
Save the Date: Fri. July 5 - 2nd Annual Golf to END PKD in Hamilton, ON
This fun event will be held at Dragon's Fire Golf Club in scenic Flamborough (Hamilton), Ontario. The goal for the day is to have fun and share some laughs, all while we unite to raise awareness and funds for critical Canadian research through the PKD Foundation of Canada. The format of the day will be a 4-person team scramble with some other unique twists and advantages to make the day enjoyable for all skill levels.
Register as a foursome for only $650, which includes practice range, 18 holes of golf with a cart, lunch, dinner and prizes! For those who would like to participate as a single, that can easily be done for $175 and we will get you paired up with other players making it stress-free for you.
Bring your friends, family and co-workers out for this incredible event and help make a difference in the lives of the PKD community while having a great time!
For more information on this event, click here.
Support the PKD Foundation of Canada by Leaving a Future Gift
Planned Giving: Legacy Gift and Bequests
Legacy Gift
Your legacy gift will enable the PKD Foundation of Canada to create a powerful philanthropic legacy by making a direct impact on the advancement of critical Canadian research. If you have not had the ability to make a major gift during your lifetime, legacy giving can be meaningful source of funding from you.
A legacy gift is a gift by Will with lasting meaning and is the simplest way to create a legacy of everlasting hope. It is a future gift that will not cost anything during your lifetime, with no extra out-of-pocket costs and your income will not decrease.
You can learn more about planned giving by clicking
here.
Wills and Bequests
Make a future gift of lasting support by remembering the PKD Foundation of Canada (PKDFOC) in your Will. A Bequest in your Will may be the biggest gift of your life, and has the power to change the lives of all affected by PKD for better. Help even more PKD patients look forward to a future of full recovery.
This gift will not cost you anything during your lifetime, with no extra out-of-pocket costs and your income will not decrease. One of the benefits of making a Bequest is that your estate obtains a charitable tax receipt for the full amount received. Also, if stocks or real estate you left have appreciated in value, your gift may be exempt from capital gains.
You can learn more about bequests by clicking
here.
Learn
Upcoming Ottawa PKD Patient Forum - June 26 2019
When: Wednesday, June 26 2019 at 6:00pm-8:30pm
Where: Ottawa Hospital Riverside Campus, Riverside Amphitheater
Guest Speakers: Dr. Pierre Brown + Jeff Robertson
RSVP Today!
Patients and their loved ones are invited to join this forum to:
- Learn about what a PKD diagnosis can mean for you or a loved one, as well as how PKD can be managed from Dr. Pierre Brown, Nephrologist, Medical Director, Hemodialysis Program and Polycystic Kidney Disease Clinic - The Ottawa Hospital.
- Hear about what resources and support systems are available to you and your loved ones from Jeff Robertson, Executive Director, PKD Foundation of Canada;
- Have your questions answered during a Q&A period led by Dr. Brown and Jeff Robertson; and,
- Meet other people living with PKD in your community.
Please note that registration will begin at 6:00pm and the presentation will start at 6:30pm sharp!
Light food & beverages will be served, and parking will be compensated.
For more information, visit the event page on our website here.
Register Today!
Register Today for the Upcoming Montreal PKD Patient Forum - Fri. September 20 2019
When: Friday, September 20th 2019 at 6:00pm-8:30pm
Where: IRCM Montreal Clinical Research Institute, Jacques-Genest Auditorium
Guest Speakers: Dr. Guillaume Bollée + Jeff Robertson
RSVP Today!
Join us for the upcoming FREE PKD Patient Forum in Montreal, QC!
Polycystic kidney disease (PKD) is one of the most common life-threatening, genetic diseases affecting Canadians and can result in the growth of cysts that enlarge the affected kidneys, destroying its ability to function.
Patients and their loved ones are invited to join this forum to:
- Learn about what a PKD diagnosis can mean for you or a loved one, as well as how PKD can be managed from Dr. Guillaume Bollée, Nephrologist and Director of the Kidney Rare Disease Clinic at the Research Centre on Rare and Genetic Diseases in Adults of the Montreal Clinical Research Institute (IRCM);
- Hear about what resources and support systems are available to you and your loved ones from Jeff Robertson, Executive Director, PKD Foundation of Canada;
- Have your questions answered during a Q&A period led by Dr. Guillaume Bollée and Jeff Robertson; and,
- Meet other people living with PKD in your community.
Light food and beverages will be offered.
Free admission. City parking. Metro Sherbrooke. All are welcome!
For more information, visit the event page on our website
here.
Register Today!
ReferPKD Tool Now Available Nationwide on endPKD.ca
The PKD Foundation of Canada is proud to continue supporting uKidney's ReferPKD tool, which is now accessible nationwide on our website here.
This tool will help you connect your general practitioner to physicians or clinics with a stated interest in autosomal dominant polycystic kidney disease. Your GP can then visit ReferPKD.com and have the option to refer directly to the physician with a well-informed referral, complete with all the information needed to plan a referral and omitting what isn’t required.
84-year-old Texan Becomes Oldest Living Kidney Donor
"When one of her homeowner association’s primary movers and shakers called last fall to say he wanted to drop by, Linda Nall feared he was coming to tell her she needed to take down the sign in the yard.
The sign appealed for an O blood type donor kidney, which the 72-year-old Nall more and more urgently needed because hers were under attack by lupus and starting to fail. Nall figured the sign might have struck some in their Wimberley community as an eyesore, but Frank Dewhurst had something else on his mind.
“I’m O positive,” Dewhurst, the association’s past president and head of the grounds committee, said upon greeting Nall. “I’m here to offer you my kidney.”
In Dewhurst’s mind, there was one catch: He was 84, an age he figured might be a deterrent to organ donation.
It wasn’t. After a series of tests confirmed he was sufficiently healthy to donate, surgeons at Houston Methodist Hospital last month transplanted one of Dewhurst’s kidneys into Nall, making him the nation’s oldest ever living kidney donor. He was just a few months short of being the world’s oldest."
You can read the full article here.
PKD Health Note
The American Kidney Fund is happy to give you a glimpse into a new beta version of their website focused on healthy eating – Kidney Kitchen!
Learn what healthy eating means when you have kidney disease. Check out basic cooking techniques here and try out all kinds of easy and exciting kidney-friendly recipes.
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.
