For many parents living with polycystic kidney disease (PKD), one question can quietly follow them for years:
Should we test our children for PKD?
Some families choose testing early. Others decide to wait until adulthood, symptoms appear, or their children are old enough to participate in the decision themselves. For many parents, there is no easy or obvious answer.
Join us for a thoughtful and compassionate roundtable discussion featuring members of the PKD community who have navigated these decisions in different ways. Together, we’ll explore some of the emotional, relational, and practical realities that can shape conversations around genetic testing, uncertainty, parenting, and family life with PKD.
Topics may include:
- deciding whether or when to test children for PKD,
- living with uncertainty,
- talking to children about PKD,
- balancing honesty and emotional safety,
- navigating fear, guilt, hope, and protectiveness as parents,
- and how different families arrive at different decisions.
This conversation is not about “right” or “wrong” choices. Every family’s situation is different, and decisions around testing can involve uncertainty, grief, anxiety, values, medical history, and differing perspectives within families.
Our hope is to create a supportive space where parents and caregivers feel less alone, while shining a light on some of the complex psychosocial issues many families quietly carry.
The discussion will also include therapeutic reflection and emotional insight from Joy Pekar, Registered Psychotherapist (Qualifying), who brings both professional experience and lived experience as the spouse of someone with PKD.
Please note:
- This event will be recorded and shared later on the PKD Foundation of Canada’s YouTube channel.
- Participants are welcome to listen quietly if preferred.
- Due to the personal nature of this discussion, audience questions may be moderated for safety and sensitivity.
We hope you’ll join us for this honest and supportive conversation.
About the Panelists
Nick Ashawasega is a PKD patient whose story was shared by Patient Voice in 2023, and by the National Post in 2026. He is a father of two, and has a passion for improving PKD diagnosis and care in Indigenous communities.
Kelly Konieczny is a PKD patient who is currently on dialysis, waiting for her miracle kidney transplant in Alberta. She is the mother of three, and has been an outspoken advocate for access to kidney transplant.
Joy Pekar is a Registered Psychotherapist (Qualifying) and mother of two. She has presented or facilitated many mental health webinars and peer support events for the PKD Foundation of Canada, informed by her family’s multi-generational lived experience with PKD.
Phouvieng Sackda is a PKD patient, transplant recipient and father of two. He and his extended family are longtime supporters of the Toronto Walk to END PKD.
Tetyana Walker is a PKD patient and mother of three. She’s volunteered with the PKD Foundation of Canada in her Manitoba community for several years.
Nina Young is a PKD patient and transplant recipient, and a mother of one. She’s been very active volunteering for PKD awareness-raising and fundraising for many years, in both Newfoundland and Ontario.