Instagram story viewer> @endpkd.ca> Posts

PKD Foundation of Canada

@endpkd.ca

2.3K

followers

300

following

The official IG account for the PKD Foundation of Canada. Dedicated to finding treatments & a cure for polycystic kidney disease (PKD). @finielampr.ca

POSTS STORIES REELS

The 2026 PKD Summit is here! Registration is OPEN! 🎉

🔬 What new PKD treatments are researchers working on?
🥗 Do you really need to give up your favourite foods to protect your kidneys?
🧬 Is there financial support for families using IVF with PGT-M to avoid passing PKD on to their children?
💚 How do you cope with the uncertainty of waiting for a kidney transplant?
🩺 When should you start planning for dialysis or transplant?

These are just some of the questions we'll explore at the 2026 PKD Summit, November 4–5!

Join us for 7 FREE online sessions with healthcare professionals, researchers and community organizations, covering everything from family planning and mental health to emerging treatments and practical PKD resources.

✅ Choose the sessions that matter to YOU.
✅ Submit questions for our presenters when you register.
✅ Join from wherever you are!

PKD affects families across generations. You and your loved ones may have very different questions, so please share this invitation with anyone who might benefit!

👉 Explore the sessions and register: www.endPKD.ca/summit, link in bio

#PKDSummit #PolycysticKidneyDisease #PKD #KidneyHealth by @endpkd.ca

completely differently?

🔬 What new approaches are researchers investigating?
🧬 Could future treatments be tailored to someone's PKD-causing genetic variant?
💊 Might medications already used for other conditions offer new possibilities?
⏳ And how close are we to seeing some of these experimental treatments become available?

There's a lot happening in ADPKD research. And a lot we still need to understand. TOMORROW, we're exploring the emerging treatment pipeline with Dr. Chris Chen, who has spent more than 20 years studying PKD.

Chris will help us make sense of what's being studied, why scientists are excited about different approaches, and what needs to happen before promising treatments can reach patients.

🧬 The Next Generation of ADPKD Therapies
📅 Wednesday, November 4 | 2 p.m. ET
💻 FREE online presentation

Part of the 2026 PKD Summit. We'd love to have you join us!

🔗 Register at www.endPKD.ca/summit, through the link in our bio.

💙 SHARE this with someone who's curious about the future of PKD treatment.

#ADPKD #PKD #PolycysticKidneyDisease #PKDResearch #KidneyResearch #PKDSummit by @endpkd.ca

If you're living with ADPKD and between the ages of 25 and 65, the MAPLE study may be for you. It’s a research trial testing a possible treatment for PKD at sites in Ontario and Quebec.

www.endPKD.ca/maple, link in bio

Not sure if the study is right for you? Talk to your doctor about your eligibility for the clinical trial. If you have questions about the study, post your questions on My PKD and we’ll get answers directly from the GSK study team

#PKD #endPKD #MAPLEstudy #PKDresearch #ADPKD #OrganDonationAwareness by @endpkd.ca

Do you have PKD? Or does PKD sometimes feel like it has YOU? 💙
Some days, you're just living your life. Other days, a test result, a new symptom or a worry about the future can make PKD feel like the biggest thing in your world. And sometimes, you just want to forget about it for a while.

Researchers have been studying how chronic illness becomes part of our identity. And they've described four different ways people may experience that relationship.

💙 When illness feels all-consuming.
💙 When we try to push it away.
💙 When we recognize it as one part of who we are.
💙 When our experiences lead us to find new meaning or connections.

But here's something important: These aren't fixed stages. And there's no requirement to find something positive about living with PKD. Our relationship with chronic illness can change throughout our lives.

At this week's 2026 PKD Summit, we're exploring these ideas with Professor Koen Luyckx, a psychologist and researcher from KU Leuven in Belgium.

His research examines identity, mental health, relationships and adaptation to chronic illness, including conditions such as type 1 diabetes and congenital heart disease.

💙 The Psychosocial Impact of Chronic Disease
📅 Thursday, November 5 | 1 p.m. ET
💻 FREE online presentation

SAVE this carousel if it gives you a new way of understanding your experience.

And SHARE it with someone who might appreciate knowing that their relationship with chronic illness doesn't have to fit into one tidy little box.

🔗 Register at www.endPKD.ca/summit, through the link in our bio.

#PKD #PolycysticKidneyDisease #ChronicIllness #MentalHealth #ChronicIllnessAwareness #PKDSummit by @endpkd.ca

What's the ONE thing you'd really like to understand better about PKD? 💙

New treatments? 🧬
Kidney-friendly eating? 🥗
Preparing for dialysis or transplant? 🩺
The emotional side of living with PKD? 💙
Family planning and future generations? 👨‍👩‍👧

We're exploring all of these NEXT WEEK!

Join us November 4–5 for the 2026 PKD Summit, featuring seven FREE online learning sessions with healthcare professionals, researchers and community organizations.

✨ Choose the sessions that matter to YOU.
✨ Submit questions for our presenters when you register.
✨ Learn from wherever you are in the world.

And because PKD often affects several generations of a family, please share this with someone you love. You may have very different questions, but there's something here for both of you.

🔗 Explore the full program and register through the link in our bio.

#PKD #PolycysticKidneyDisease #PKDSummit #KidneyHealth #KidneyDisease by @endpkd.ca

Waiting for a kidney transplant can feel like "wait and hurry up." 💙

You wait for appointments, tests, donor evaluations and decisions. You wait to find out whether a potential living donor can donate. You wonder whether your kidney function will decline before a transplant is possible. And you try to keep living your life while so many important questions remain unanswered.

Then, sometimes after months or years of waiting, everything can start happening very quickly. It's an emotional roller coaster that people outside the transplant experience may not fully understand.

In our late-stage PKD Mind Matters conversations, we hear about these feelings again and again. The anxiety. The hope. The frustration. The uncertainty. If this sounds familiar, you're not alone.

💙 SAVE this carousel if you've experienced this kind of waiting, or SHARE it with someone who wants to better understand what preparing for a kidney transplant can feel like.

We're exploring the mental health side of this experience at the free 2026 PKD Summit.

Mental Health Before Kidney Transplant with Joy Friedman @findjoypsychotherapy
📅 Wednesday, November 4 | 1 p.m. ET
💻 FREE online session

We'll talk about the emotional challenges of waiting for transplant and ways to find support while navigating so much uncertainty. You can submit a question for Joy to consider when you register.

🔗 www.endPKD.ca/summit, link in bio.

#PKD #PolycysticKidneyDisease #KidneyTransplant #TransplantJourney #MentalHealth #PKDSummit by @endpkd.ca

PKD runs in your family. But what choices are available if you're thinking about having children? 🧬

For some families, IVF with preimplantation genetic testing (PGT-M) is an option for trying to avoid passing PKD on to the next generation. But what if the process feels overwhelming? Or the costs put it out of reach?

💙 Here's something many Canadian families may not know: PKD-Free Alliance is a US-based nonprofit that offers information, support and grant funding to eligible families in Canada and the US. And you don't need to have all the answers before reaching out to learn more.

SAVE this carousel if family planning is something you're thinking about, or SHARE it with someone who might benefit from knowing this support exists.

Want to learn more? Join Kevin Schnurr and Melinna Sanchez from PKD-Free Alliance, along with genetic counsellor Sheila C. Johal, at the free 2026 PKD Summit.

PKD-Free Alliance: Helping families plan for a PKD-free future
📅 Wednesday, November 4 | 12 p.m. ET
💻 FREE online session

Learn about available programs, financial assistance, eligibility and how to get started. You can submit your own questions for the presenters when you register!

🔗 Link in bio.

#PKD #PolycysticKidneyDisease #FamilyPlanning #GeneticCounseling #IVF #PKDSummit by @endpkd.ca

Your eGFR is dropping. But what are you supposed to DO about it? 🩺

You might know that dialysis or a kidney transplant could be in your future. But when should you start preparing? When should a potential kidney donor begin testing? And what choices will you have?

These are questions we hear regularly from people living with later-stage PKD. And they're worth asking before you're facing an urgent decision.

💙 SAVE this carousel for your next nephrology appointment. Slide 8 has all six questions together, so you can take a screenshot or bring the list with you.

SHARE it with someone who might be approaching kidney failure, or with a family member who's helping them navigate their care.

Want to understand more about how these decisions are made? Join nephrologist Dr. Mike Bevilacqua for Navigating late-stage PKD, part of our free 2026 PKD Summit.

📅 Thursday, November 5 | 3 p.m. ET
💻 FREE and online
🔗 www.endPKD.ca/summit, link in bio.

You can submit a question for Dr. Bevilacqua to consider when you register.

#PKD #PolycysticKidneyDisease #LateStagePKD #KidneyTransplant #Dialysis #PKDSummit

Illustrations created with AI. Event content prepared by Dr. Mike Bevilacqua, nephrologist by @endpkd.ca

Bananas? Potatoes? Protein? Salt? 🥗

If you have PKD, you've probably heard plenty of advice about foods you're supposed to avoid. But does every restriction apply to everyone with PKD? And how do you figure out which nutrition recommendations are right for YOU?

The answers can depend on your kidney function, blood test results and other health needs.

💙 Save this carousel if you've ever wondered which food rules you really need to follow, or share it with someone who finds kidney-friendly eating confusing. Want to understand more?

Join registered dietitian and certified diabetes educator Emily Campbell @kidneynutrition at the 2026 PKD Summit! Food Freedom with PKD: How to Eat Well Without a List of Foods You ‘Can't’ Have

📅 Thursday, November 5 | 12 p.m. ET
💻 FREE online session

Bring your questions! You can submit them for Emily's consideration when you register.

🔗 Register for this and the other seven PKD Summit sessions at www.endPKD.ca/summit, link in bio.

#PKD #PolycysticKidneyDisease #KidneyNutrition #KidneyHealth #PKDSummit

Illustrations created with AI. Nutrition information for the presentation being developed by Emily Campbell, RD CDE. by @endpkd.ca

🍕🍗 Pizza. Nachos. Chicken wings. When someone tells you to change your diet because you have PKD, it's easy to imagine a future full of foods you can't eat.

But eating for kidney health doesn't have to mean giving up every meal you love. Sometimes, it's about making a few changes:

🥬 More vegetables
🧂 Less sodium
🫘 More plant-based proteins
🌿 More flavour from herbs, spices, garlic and lemon

And sometimes, it's as simple as dipping your chicken wings in sauce instead of coating them.

One idea we especially love from kidney dietitian Emily Campbell @kidneynutrition: Add before you subtract. Before asking what you need to give up, think about what could make your meal more balanced.

Of course, your nutrition needs depend on your kidney function and overall health. There's no single PKD diet that works for everyone.

💚 Save this carousel for the next time you're planning dinner.

🔗 Read Emily's latest Kidney Nutrition blog for more practical swaps and a hearty plant-based chilli recipe. www.endPKD.ca/nutrition, link in bio.

What's one favourite meal you've adapted to make it more kidney-friendly? Share your ideas below!

#PKD #kidneynutrition #kidneyfriendlyfood #kidneyfriendlyrecipe #renaldiet #pkddiet #nutrition

Illustrations created with AI. Nutrition information developed by Emily Campbell, RD CDE, and reviewed by the PKD Foundation of Canada. by @endpkd.ca

Living with earlier-stage PKD? You probably have questions.

Maybe your kidney function is still good, but you're wondering what the future holds.

Should you be changing what you eat? What kinds of exercise are safe? How do you know if your

PKD is progressing? Is tolvaptan something you should consider?

Or maybe you're thinking about family planning, genetic testing, life insurance, or how to manage the uncertainty of living with PKD.

You don't have to be newly diagnosed to have questions. And you don't have to wait until your kidney function declines to start looking for answers.

💚 We've brought together resources for people living with earlier-stage PKD, including information about kidney health, treatment options, nutrition, exercise, family planning, emotional well-being, and more.

👉 Explore the resources: www.endPKD.ca/early-PKD, link in bio

💬 Want to talk about some of these questions with others who understand?

Join our next PKD Mind Matters: Earlier-Stage PKD conversation. It's an informal, welcoming space to share experiences, ask questions, or simply listen.

You don't need to have a particular problem to discuss. Sometimes it's just good to talk with people who get it.

👉 Register for our next conversation: www.endPKD.ca/event_listing, link in bio by @endpkd.ca

💙 Pregnancy and Infant Loss Remembrance Day | October 15

Some families in our PKD community are grieving children they never had the chance to bring home. Others are remembering babies whose lives were far too short.

Pregnancy and infant loss can be part of the experience of living with PKD. For some families, it's connected to autosomal recessive PKD (ARPKD) or severe, early-onset ADPKD. For others, it may follow fertility treatment, including IVF with or without genetic testing (PGT-M).

These losses touch parents, grandparents, siblings, and entire families. And while their grief may not always be visible to others, the love and memories remain.

Today, we want you to know that your loss is not invisible to us. Neither is the child you remember, or the future you imagined together.

Whether your loss was recent or many years ago, whether you speak openly about it or hold it privately, there is a place for you in our PKD community.

We remember with you. 💙

#PregnancyAndInfantLossRemembranceDay #PKD #ARPKD #ADPKD by @endpkd.ca