May 31, 2017

May 2017 PKD e-News

SUPPORT

Save the Date: 2017 Walk to END PKD Registration to Open June 12!

We are gearing up for another exciting fundraising season! Visit our website on Monday, June 12th, to register for your local Walk to END PKD online. Stay tuned on social media for announcements and watch for our official launch email coming soon.

This year we have a new Walk name and new Walk logo! The Walk to END PKD logo carries forward the Foundation's rebranding revealed at the end of 2016 with the new symbol representing who we are as a community.

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The new name, Walk to END PKD, (formerly Walk for PKD) was updated to better align with our mission to discover treatments and a cure for polycystic kidney disease and improve the lives of all it affects. You can read about rebrand, here.

Donate Your Vehicle to the PKD Foundation of Canada!

We are excited to share that we now accept vehicle donations through our partnership with Donate a Car Canada! If you or anyone you know is interested in making a donation to the PKD Foundation of Canada in this fashion, visit endpkd.ca/donate or finielampr.ca/faire_un_don.

Your donation, no matter the size, will make a difference in the lives of 12.5 million people worldwide who are affected by polycystic kidney disease.

LEARN

Large Tolvaptan Trial Results Show Positive Future for ADPKD Patients

We are glad to share some great news for the Canadian PKD community, as tolvaptan receives positive results from an additional one year international trial. The trial outcome was positive for tolvaptan in the treatment of ADPKD.

The full announcement can be found here.

Cliquez ici pour la version en français.

Watch: St. Joseph's Healthcare Hamilton Live-Streams a Kidney Transplant

On Wednesday, May 10th, St. Joseph's Healthcare Hamilton live-streamed a kidney transplant surgery to raise awareness about kidney disease and the importance of organ donation. Their team was available both in and outside the operating room to answer viewer questions. Meet the patients, see the Q & A, and watch the videos at stjoes.ca/livestream.

Try: Recipes from Toronto Chapter Meeting: Healthy Cooking for PKD Patients and Their Families

The Toronto Chapter held it's first cooking class on May 3rd where attendees were able to try out some fantastic recipes ideal for patients with PKD as well as for kidney transplant donors and recipients.

You can access the recipes here.

Webinar: Q&A with PKD Expert Terry Watnick, M.D.

Guest speaker and PKD Foundation Scientific Advisory Committee Chair (USA) Dr. Terry Watnick answers questions from the audience for this month's webinar.

AWARENESS

In the News: PKD Patient Happy with New Treatment Plan

Britney Ambrose, a 32-year-old archeologist, was diagnosed with PKD when she was 17, and said thanks to the new drug and a treatment plan developed by surveying kidney specialists and patients, her outlook on PKD has changed.
“My future looks a little brighter than it did before,” she said.

The drug, tolvaptan (commonly referred to as Jinarc), prevents cysts from growing quickly by blocking receptors that helps reabsorb water, ultimately protecting kidney function.

Read her story in Metro Calgary with access to the full paper and recommendations for care.

New Blog Post: PKD Will Not Beat Me - A Letter From a PKD Patient to Her Mom

In a touching letter just ahead of Mother's Day, Valen expresses her appreciation to her mother for her love and support through both their PKD journeys.

"To all moms who are sick or have raised a sick child and battle with the emotions of feeling helpless, please know that your sheer presence is all we need. What keeps us fighting is knowing that you are there in case anything goes wrong, to look into your eyes for strength and to hold your hand." Read the full blog post.

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.

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