October 2023 PKD e-News
Welcome to the PKD Foundation of Canada's October e-News! We have provided information important to helping you take action in your journey with PKD.
To view the e-News in French click here!
SUPPORT
Thank you!
Another successful Walk to END PKD season is almost over!
Our in-person and virtual Walks are finished, and we’ve had some wonderful success stories from several teams including:
- The Beaton PKD Path ($9,500) from Halifax, NS
- A Family Affair ($8,000) from Fort Erie, ON (for the Toronto Walk to END PKD)
- L'Équipe Verdun ($11,000) from Montreal QC, and
- Jan’s Butterflies to the MAX ($22,000) from Newmarket, ON (for the Toronto Walk to END PKD)
Click on the team names above, to read their PKD stories. Learn how they were able to raise so much for PKD!
There's still time to meet or exceed your own fundraising goal. The 2023 Walk to END PKD website will be open until the end of October.
Would you like to see our 2023 Walk to END PKD photo album on Facebook? You can find photos from every in-person walk here.
The funds raised through our Walk to END PKD campaign go towards critical Canadian research and Fellowship funding, as well as strengthening our mission to promote programs of research, education, advocacy, awareness, and support for those living with PKD.
Mental Health
Announcing PKD Mind Matters!
For many years, one of the ways that the PKD Foundation of Canada has supported the PKD community has been through organizing and facilitating webinars on a variety of PKD topics.
We’re excited to announce that in 2024, we will be expanding these webinars to focus monthly on mental health concerns often experienced by PKD patients.
PKD Mind Matters will provide a safe space to have enriching discussions, ask questions, and connect with others who are sharing similar PKD journeys as you are.
We’ll be sharing more about this initiative in the weeks to come, and we hope you’ll join us for the webinars in 2024.
LEARN
2023 PKD Summit
Registration now open!
The 2023 PKD Summit is just around the corner! Virtual events will be held on Friday, November 17, from 10am-4pm EST.
Click here to learn more about the following topics, and to register!
- Getting to Know the PKD Foundation of Canada
- Pain Management & PKD
- The Importance of Nutrition & PKD
- Health Break Cooking Demo
- Progress in the Care of Patients with Polycystic Kidney Disease
- Basics of Clinical Care for Children with ADPKD & ARPKD
- Being Your Own Best Advocate
Kidney Nutrition
This month's blog post: 'Taking care of you' with PKD
You’ve probably heard about self-care before. As PKD patients, it is important to take care of you.
This is self-care: taking steps to preserve or improve your health through lifestyle changes.
This month's blog post by Emily Campbell, registered dietitian, looks at how making health changes can help you manage your kidney disease, and live life to the fullest.
Self-advocacy
"I opted to see a new nephrologist, and our initial conversation changed everything."
Ciara Morin - Registered Holistic Nutritionist, real food advocate and PKD warrior - recently saw a new nephrologist to help manage her PKD diagnosis. She wanted to share her story because it was a great, healthy step to take on her journey with polycystic kidney disease, and she gained a lot just from one meeting with a new doctor.
Read her story of self-advocacy here. You can also catch Ciara presenting on the topic of Being Your Own Best Advocate at our upcoming 2023 PKD Summit. Read more about her topic and register here!
Montreal Forum
Video now available on YouTube!
The video for our Montreal PKD Patient Forum that was held on September 19, 2023 is now available on YouTube! Check out it and our other PKD Webinars on our YouTube channel.
Topic: In recent years, the management of polycystic kidney disease has undergone a number of developments. The aim of this interactive conference was to provide an update on autosomal dominant polycystic kidney disease (ADPKD). How is it diagnosed? What are the symptoms? How does the disease evolve, and how can it be treated?
Speaker: Dr. Marie-Noëlle Pépin, IRCM Montreal Clinical Research Institute.
(Note that this webinar was presented entirely in French.)
AWARENESS
Voices of PKD
Wendy Marshall-Fagan, Moncton NB
"For me, this is definitely an invisible disability. I’m still working full-time. I still look relatively healthy on the outside. I’m still active, and I still travel. People are shocked when I tell them my current kidney function is 12%."
This month, Wendy shares her ADPKD story. She was diagnosed at the age of 18, having inherited PKD from her father. Now in her 50s, her kidney function is declining, and she's savouring each day as it comes. Read her story here!
Nick Ashawasega
New video of his PKD story now on YouTube!
"I don’t want any young Indigenous person to ever look at me and think that their mental health struggles will prevent them from succeeding like I have. We succeed despite our challenges. We persevere through our trauma."
Last month, we shared the PKD story of Nick Ashawasega. Diagnosed as a child with ADPKD, This month, his video story is now available to watch on YouTube! You can watch the two-minute video here.
In the news
Highlights of PKD stories
This month we'd like to share some news stories about people from our own PKD community!
In late April of this year, sisters and PKD warriors Carolyn Nagel and Barb Hampel reached out to their local newspaper to promote the mammoth garage sale that they were planning, with all the money raised going towards the Walk to END PKD.
The interest in the first article was so great that the paper wrote a second, more in-depth article about the sisters and their family. The community outpouring of support was so great that the garage sale raised more than $7,000 for PKD.
The sisters credit the news articles with raising the awareness in the community about PKD and the need for more research.
The other recent news stories are about PKD advocate Nina Young, who reached out to her local media in Orillia, ON, before PKD Awareness Day on September 4th.
Nina is a passionate supporter of the PKD Foundation of Canada, and founded our Corner Brook, NL, chapter before she moved to Ontario. Both articles - one in the Orillia Matters newspaper, and the other in Orillia Today - do a great job of raising local awareness about PKD.
If you'd ever like some assistance reaching out to your local media with your own PKD story, we'd be thrilled to help facilitate media outreach for you.
Just contact our office, and we'll work with you to tell your story.