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.
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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.
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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Alex Coglianese
Why I Walk: Alex Coglianese The PKD Foundation has been a landmark in Alex Coglianese’s life for as long as she can remember. Born the same year as the Foundation’s establishment, she recalls her beloved father, Fred, a PKD patient...
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Paige Trischler
Paige Trischler “Each day I am thankful for Nights that turned into mornings Friends turned into family Dreams that turned into reality And likes that turned into loves…” -Anonymous Those four lines sum up my motto on life. I am...
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Nell Gustavson
[caption id="attachment_2353" align="alignright" width="300"] Nell (right) and Liz[/caption] Finding hope and new life through a long-lost family bond I was diagnosed with PKD in 1987 at the age of 27. This was not a big surprise for me, especially since...
Read MoreHonoring baby Helen’s memory through fundraising
Voices of PKD: Kristen Neary On May 24, 2002, my husband Keith and I welcomed our first daughter, Helen Grace into the world. She was perfect on the outside and let out a cry after being born. This was a...
Read MoreRemembering baby Lauren in honor of Pregnancy and Infant Loss Remembrance Day
Voices of PKD: Megan Kuck In February 2005, my husband and I had a second ultrasound to help us determine the gender of our second child. During the ultrasound, the tech went quiet and told us that she would be right...
Read MoreHighfill family keeps their babies’ memories alive at the Walk for PKD
Voices of PKD: Lauren Highfill We have lost two babies to polycystic kidney disease (PKD). Ironically they both passed away on July 21st (one year apart). It makes remembering this sad day a little easier to have it all on one day!...
Read MoreSpreading kindness in honor of baby Juniper’s memory
Voices of PKD: Mandy Wakely On December 10, 2008 my daughter Juniper Isabelle Wakely was born. Twenty minutes later, she died in my arms from autosomal recessive polycystic kidney disease (ARPKD). Even with all the planning I’d done in preparation for...
Read MoreJennifer 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]...
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