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.
By clicking Subscribe you’re confirming that you agree with our Terms & Conditions.
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.
Mary Suydam
I have ADPKD. I was blessed to receive a life-giving transplant nearly 6 years ago that gave me a second chance at life. I walk for my mother, who passed away way before her time. I walk for all the PKD patients who wait for a transplant....
Read More
Jacque English
I was diagnosed with PKD in 2003. I manage my disease with blood pressure medication and regular trips to my nephrologist. My kidneys are getting larger and my function is beginning to decline. Seven years ago this August, my mom...
Read More
Emily Stoll
At my summer family reunion vacation this year, I organized a Party for the PKD Foundation that was sponsored through a Thrivent Financial Action Grant. Through the grant, I got $250 that I used to purchase refreshments for the party,...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More