News
September 04, 2019

August 2019 PKD e-News

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August 2019

Greetings!

Welcome to the PKD Foundation of Canada's August 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

Take the TEAL PLEDGE. By taking the pledge, you can become an ambassador to the cause and help us spread the word about PKD!

Voices of PKD: David Lafleche, Ottawa ON

"It has been a long journey with a diagnosis going back to around my college days that resulted in some very early and profound life-changing decisions.

Despite those early emotional impacts I'm happy to say, all things considered, my life's journey has turned out pretty well to this point and I have so very much for which to be thankful. However there certainly were some bumps and surprises along the way and of course there remain major challenges awaiting down the road as my kidney function continues to decline."

Read David's full story here.

PKD Foundation of Canada Welcomes New Halifax Chapter!

We are happy to be launching the new Halifax Chapter! And we are planning a number of ongoing chapter activities that include:

  • educational meetings
  • support groups & socials
  • increasing awareness of PKD
  • local fundraising events

PKD Foundation of Canada Chapters are led by volunteers who want to make a difference in the fight to end PKD! Read more about the Halifax Chapter here.

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!

Support

Register Today for the 2019 Walk to END PKD!

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.

REGISTER TODAY!

SASKATOON, SK
September 4

Rotary Park, 202 Saskatchewan Cres E
Saskatoon, SK

Click here to register today!

GUELPH, ON
September 8

Riverside Park, Large Pavilion
709 Woolwich Street, Guelph ON

Click here to register today!

OTTAWA, ON
September 21

Andrew Haydon Park
3169 Carling Ave, Ottawa ON

Click here to register today!

MONTREAL, QC
September 22

Centennial Park, 3000 Lake Street
Dollard Des Ormeaux QC

Click here to register today!

TORONTO, ON
September 29

Centennial Park, Picnic Area 6 & 7
575 Centennial Park Boulevard, Etobicoke ON

Click here to register today!

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!

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 University Health Network's 2019 Toronto PKD Scientific Conference

When: Saturday, September 7 2019 at 7:00AM - 5:00PM

Where: Chestnut Residence & Conference Centre, Toronto

Registration fee of $150 for full-day and $75 for half-day for nephrologists and pharmaceutical personnel.
No registration fee for allied health professionals, students or patients.

Educational Objectives

  1. Review clinical features and pathobiology of ADPKD
  2. Update recent advances in PKD translational research
  3. Illustrate how advances in diagnostic and therapeutic may impact clinical practice
  4. Expert discussion of challenging clinical cases

To reserve your spot please RSVP to Ji Lee at Ji.Lee@uhn.ca

Register Today for the Upcoming Hamilton Chapter Meeting Living with PKD: Diet and Nutrition

When: Monday, September 9 2019 at 6:30PM - 8:00PM

Where: St. Joseph's Healthcare Hamilton, Campbell Auditorium, Juravinski Tower

Guest Speaker: Brittany Pettigrew, Registered Dietitian, PKD Clinic, St. Joseph's Healthcare Hamilton

RSVP TODAY!

Join us as Brittany walks us through the dietary recommendations for someone living with polycystic kidney disease (PKD). This includes the need to limit protein to a moderate amount, the importance of balancing non-animal and animal proteins, the need to control salt intake, the necessity of high water intake, and the benefits of including isoflavones and omega 3's in the diet.

Parking for a fee available on-site, with free parking available off-site (side streets).

Family, friends, caregivers and new members are always welcome!

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

Register Today for the Upcoming Halifax PKD Patient Forum

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

Where: Halifax Infirmary, Royal Bank Theatre

Guest Speakers: Dr. 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

When: Friday, September 20 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 for the Upcoming Saskatoon PKD Patient Forum

When: Wednesday, October 23 2019 at 6:00PM - 8:30PM

Where: Dr. Freda Ahenakew Branch Library

Guest Speakers: Dr. Elene van der Merwe + Jeff Robertson

RSVP TODAY!

Join us for the upcoming FREE PKD Patient Forum in Saskatoon, SK!

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. Elene van der Merwe, FRCPC University of Saskatchewan, MD South Africa. Clinical Assistant Professor of Medicine, Fellow of the College of Pathologist (Chemical Pathology) South Africa. Fellow of the Royal College of Pathologist United Kingdom, Fellowship Nephrology University of British Columbia;
  • 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. Elene van der Merwe and Jeff Robertson; and,
  • Meet other people living with PKD in your community.

Light food and beverages will be offered.

Free admission. All are welcome!

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

Register Today for the Upcoming Edmonton PKD Patient Forum

When: Thursday, October 24 2019 at 6:00PM - 8:30PM

Where: University of Alberta Hospital, Walter C. Mackenzie Health Sciences Centre, Classroom D:2F1:04

Guest Speakers: Dr. Steven S Caldwell + Jeff Robertson

RSVP TODAY!

Join us for the upcoming FREE PKD Patient Forum in Edmonton, AB!

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 S Caldwell, BSc(Hons), DipMedSci, MBChB(Hons), FRCPC, FRCP Edin, FRCP Lond, University of Alberta, Edmonton, Alberta;
  • 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 S Caldwell and Jeff Robertson; and,
  • Meet other people living with PKD in your community.

Light food and beverages will be offered.

Free admission. 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.

Clinical Trials: A Lifeline for Patients with Rare Disease

The President and CEO of the Canadian Organization for Rare Disease, Durhane Wong-Rieger, made a presentation at the Clinical Trials Ontario Conference in May 2019 in Toronto, Ontario.

This important presentation was part of a session titled "Keeping the Science Ahead of Me: Perspectives on Clinical Trials"

You can watch the presentation here.

Having a Kidney Transplant? Find Out What to Expect Post Surgery

Preparing for a kidney transplant can be overwhelming. Once you get through the evaluation process and are ready for surgery, you may be thinking of questions about what to expect after your transplant. Watch the presentation below to get answers to some of the most common questions transplant recipients have about what to expect when it is time to leave the hospital, recover from surgery and get used to the new normal of living with a kidney transplant.

You can watch Mandy Riester's presentation here.


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.