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.
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.
Jennifer Tompkins Kirshenbaum amplifies voices of those living with PKD by particpating in an in-district meeting
[caption id="attachment_18714" align="alignright" width="300"] From left to right: Walk Coordinator Angi Ulrich, Volunteer Chapter Coordinator Kim Beger and her husband, Nate Beger, and Volunteer Education Coordinator Jennifer Tompkins Kirshenbaum and her husband, Matt Kirshenbaum.[/caption] During the legislative year, the PKD...
Read MoreSolving two problems at once
[caption id="attachment_1456" align="alignright" width="400"] Through the PKD Foundation's vehicle donation program, the Beger family was able to solve two problems at once: they got rid of the car they didn't need, and were able to provide funds for the Foundation.[/caption]...
Read MoreKriste Lewis fulfills her dreams and lives her best life with PKD
[caption id="attachment_1103" align="alignright" width="284"] Kriste and her family at the New Orleans Walk for PKD.[/caption] It was always on Kriste Lewis's bucket list to try out to be an NFL cheerleader. As she approached her 40th birthday, she decided to...
Read MoreGrammy nominated artist co-produces album to benefit the PKD Foundation
[caption id="attachment_1090" align="alignright" width="350"] Grammy nominated artist Jeff Lorber knows all to well the impact PKD has on families.[/caption] Grammy nominated keyboardist/composer/producer, Jeff Lorber, and guitarist, Chuck Loeb team up to co-produce BOP, a one-of-a-kind traditional bebop album that brings...
Read MoreYoung scientist on mission to find alternative to his own transplant
[caption id="attachment_1089" align="alignright" width="250"] At 17 years old, Demetri Maxim is already a prize-winning scientist, budding inventor and patent holder, Olympic ski team hopeful, avid cyclist and drummer.[/caption] If Demetri Maxim has anything to say about it, he could be...
Read MoreTransplant Games provide a way to honor organ donation
[caption id="attachment_1091" align="alignright" width="420"] JoAnn Villanueva and her sister, Janice Gill, train for their swimming event.[/caption] The Transplant Games of America is a multi-sport festival event for individuals who have undergone life-saving transplant surgeries. Competition events are open to living...
Read MoreBrightening the future for PKD families
[caption id="attachment_1086" align="alignright" width="300"] Brianna was diagnosed with PKD at just 11 years old, making her the youngest in a family full of PKD.[/caption] The spring, for many, signals a new start and a perfect time to set new goals...
Read MoreKissing for a cause
[caption id="attachment_1092" align="alignright" width="240"] For Karli and Cuyler Franzke, an age-old wedding tradition turned into an opportunity to raise funds to support the PKD Foundation.[/caption] Every wedding is a little different - some couples jump over brooms, break glasses or...
Read MoreA family tree of PKD
[caption id="attachment_1084" align="alignright" width="370"] Barbara had no idea that PKD would impact her right when she was starting a family of her own.[/caption] Polycystic kidney disease is a family disease. Like freckles and blue eyes, there's a chance that a...
Read MoreA heart of gold
[caption id="attachment_1097" align="alignright" width="370"] A Heart of Gold stopped beating,Two shining eyes at rest.God broke our hearts to proveHe only takes The Best.God knows you had to leave us,But you did not go alone ~For part of us went with...
Read MoreServing as a voice for young people with PKD
[caption id="attachment_1093" align="alignright" width="320"] Now a college freshman, Kerilyn was diagnosed with PKD at just 13 years old.[/caption] The average teen is more concerned with school, friends and a ride home from volleyball practice than the health of their renal...
Read MoreTaking a stand to change family history
[caption id="attachment_1087" align="alignright" width="300"] When Candi started seeing family members affected by the disease, she took matters into her own hands.[/caption] I didn't want my uncle to be taken away so I just stepped in and helped. Many families carry...
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