News
July 31, 2019

July 2019 PKD e-News

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July 2019

Greetings!

Welcome to the PKD Foundation of Canada's July e-News! We have provided information important to helping you take action in your journey with PKD.

Awareness

September 4th 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!  

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
 
You can also help us by securing your local town or city's proclamations. Take the TEAL PLEDGE to help us secure proclamations! Alternatively, you can email us here or call us at 1-877-410-1741.

Voices of PKD: Michael Coyle, Burnaby BC

"“YOU need to see a doctor!” said the nurse, pointing a finger and using her most serious voice.

I was in an advanced first aid class with several Search and Rescue (SAR) volunteers. My partner and I were struggling to take blood pressure measurements “old school”: manually with the blood pressure cuff and a stethoscope. My partner kept getting a very high value when measuring my blood pressure - what was he doing wrong?"

Read Michael's full story here.

 

Share your story!

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!


Sir Richard Branson Using His Voice to Promote Organ and Tissue Donation

"Organ donation can be a difficult subject, it’s something many of us find hard to talk about and often know little about. In doing so, we’re missing out on some of the most exciting progress being made to save lives across the world.

Over the years, I have called for an opt-out system to be the default position for organ donation globally."

You can read the full article here.

 

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
GUELPH, ON
September 8
Riverside Park, Large Pavilion
709 Woolwich Street, Guelph ON
OTTAWA, ON
September 21
Andrew Haydon Park
3169 Carling Ave, Ottawa ON
MONTREAL, QC
September 22
Centennial Park, 3000 Lake Street
Dollard Des Ormeaux QC
TORONTO, ON
September 29
Centennial Park, Picnic Area 6 & 7
575 Centennial Park Boulevard, Etobicoke ON

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! 

Join us for 2019 Toronto Walk to END PKD Launch Party on August 28th!

When:
Wednesday, August 28 2019
From 5:30PM - 9:00PM

Where:
Boston Pizza - Yonge & Empress
5170 Yonge St
Toronto, ON M2N 5X2

Join us at Boston Pizza - Yonge & Empress to kick your Walk to END PKD fundraising efforts into high gear! Bring your friends, family, co-workers and entire Walk Team out for a wonderful night of fantastic food and friends, as we continue to increase awareness of PKD in the local community. Enjoy complimentary food, enter amazing raffles and place your bid on our fabulous silent auction items! 
 
If you haven't already done so, be sure to register online for the Toronto Walk to END PKD taking place on Sunday, September 29, 2019 by clicking on the button below.

Support the PKD Foundation of Canada by Leaving a Future Gift

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

Register Today for the Upcoming Halifax PKD Patient Forum - Thursday September 12th 2019


When: Thursday, September 12 2019 at 6:00PM - 8:30PM

Where: Halifax Infirmary, Royal Bank Theatre

Guest SpeakersDr. Steven Soroka + Jeff Robertson

RSVP Today!

Join us for the upcoming FREE PKD Patient Forum in Halifax, NS!

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. Steven Soroka, Professor of medicine, Nephrologist and Surveyor for Accreditation Canada. He is also Chair of the physician advisory committee for Accreditation Canada and Co-Lead of the Central Zone Renal Program, Nova Scotia Health Authority (NSHA);
  • 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. Steven Soroka and Jeff Robertson; and,
  • Meet other people living with PKD in your community.
Light food & beverages will be served and parking will be compensated.
 
Free admission. All are welcome!
 

For more information, visit the event page on our website here.

Register Today for the Upcoming Montreal PKD Patient Forum - Friday September 20th 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.

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.
Please note: At this time, endpkd.ca/referPKD and referPKD.com only list Canadian physicians or clinics with a stated interest in ADPKD.

Canadian Nephrology Trials Network Launches New Website


Interested in learning about what clinical trials are currently underway in Canada? Visit the new website of Canadian Nephrology Trials Network (CNTN).

For updated information on new clinical trials in Canada visit the website here!

Drug Compound Discovery Could Pave the Way for Treatment of ADPKD

"Drug compound discovery could pave the way for treatment of rare kidney disease known as autosomal dominant polycystic kidney disease or ADPKD. 

Scientists from the University of Sheffield are part of an international collaboration to develop a new class of drugs to treat a genetic kidney disease which is a major cause of kidney failure.

Working with Glasgow-based biotech company Mironid and colleagues in the US, the researchers have carried out successful laboratory tests of a compound developed by Mironid to treat ADPKD, an hereditary, progressive disease which affects over 60,000 people in the UK and around 12 million people worldwide."

You can read the full story here.

 

PKD Health Note

Top 5 Summer Travel Tips for Kidney Patients

"You've already broken out the shorts and t-shirts and cleaned your bbq grill. Summer's around the corner and even if you have kidney disease, you can take the road trip or exotic vacation you dreamed about all winter."

You can read the full article here.