Share Your PKD Story
Whether you’re a person with ADPKD/ARPKD, a caregiver, parent to a child with PKD, or a supportive friend, you’re an important part of the PKD community. By telling your story, you can help others feel less alone on their PKD journey.
Share Your Story
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Voices of PKD
Voices of PKD is a collection of stories, testimonies, photos and videos that tell the story of PKD through the eyes of the PKD community. You can help give a voice to a widely unknown disease by sharing your story. Your experiences can paint a more powerful picture of what it’s like to live with PKD.
Lisa Mohr
My father, Will, and his two brothers had PKD. Will died in 1980 when I was only 17, and I have very few memories of him other than him being sick. He and my mother, Audra, had four children. My...
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Stephanie Smetana
My earliest memory of my mom suffering the effects of PKD was of her laying on our couch crying in pain as another cyst had burst. My mom is not a crier. I never got to meet my maternal grandmother...
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Patti Ruffin
Seeing five family members suffer from PKD has given me the passion to carry on the legacy that they couldn't because they ran out of time. I can't control the fact that I have PKD, but I can control how...
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Maureen Bickings
PKD is not be allowed to beat me! Diagnosed in my thirties with a husband, 3 children and life in full swing, I was terrified! Life changed, not abruptly at first, but slowly. Over the span of a few years...
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Gene Okun
Gene Okun Meet Gene Okun! Gene has PKD, and so did his father. Since his diagnosis, Gene’s kidneys have grown big (doctors say they may be the world’s largest) and dumb (functioning at only 18 percent). Currently in search of...
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David Baron
David Baron, Ph.D. I am often dumbfounded by the rapid advances made in molecular biology and genetics since my graduate school days in the 1970’s. It’s all I can do to keep up, but it is the kind of work...
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Tom MacAulay
Pedaling to Cure PKD Last month, friends Thomas MacAulay, Bill King, Mike Bizal, Ed Williams, Art Berger, and Chuck Mattioni set out on an 18-day biking Tour down the Pacific Coast Highway from Seattle to San Diego to raise awareness...
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Nicole Harr
My best friend is giving me the gift of life It’s official: I have a living donor. There have been very few times in my life that so few words have held such tremendous meaning and have brought such profound...
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Paul Chapman
Hiking to end PKD: Paul Chapman When someone you love has been affected by PKD, one of the most powerful ways you can help fight for them is by raising funds toward research. Whether you donate by yourself, host an...
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Peggy Krusell
Why I Walk: Meeting milestones to fund research This year in the National Capital Chapter, one team is celebrating some major milestones in their contributions to the Walk for PKD. We recently sat down with team captain Peggy Krusell to...
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Beth Leven
Volunteer Appreciation: Beth Leven In honor of Volunteer Appreciation Week, we put together a special Q&A between an experienced Coordinator and a new Coordinator. Beth Leven, Austin Walk Coordinator, has been involved in the PKD Foundation’s volunteer leadership for the...
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The Phelps Family
The Phelps Family During National Kidney Month in March, Ashley Phelps and her husband Michael sat down for an open discussion about her ADPKD diagnosis, how it affects their family, and what the future holds for their two sons: Michael:...
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