Voices of PKD

Nell Gustavson

I was diagnosed with PKD in 1987 at the age of 27. This was not a big surprise for me, especially since my father, grandmother and aunt all had the disease. The surprise was who donated a kidney to me—my niece, Liz, whom my older sister had placed for adoption at birth!

PKD Foundation |

Honoring 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 […]

PKD Foundation |

Spreading 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 […]

PKD Foundation |

Patti Ruffin’s advocacy for PKD draws senator’s Health Aide to the cause

It’s important to have advocates meet with members in Congress, either in DC or in the representatives’ home office, to build a relationship and discuss legislative priorities and funding to NIH. Patti Ruffin, Volunteer Walk Coordinator for the San Antonio […]

PKD Foundation |

Grammy nominated artist co-produces album to benefit the PKD Foundation

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 together world-class musicians. Jeff Lorber is a kidney transplant recipient who knows all too well the impact PKD can […]

PKD Foundation |

Young scientist on mission to find alternative to his own transplant

If Demetri Maxim has anything to say about it, he could be the solution to his own problem. Demetri has PKD. He’s also a prize-winning scientist, budding inventor and patent holder, Olympic ski team hopeful, avid cyclist and drummer. And […]

PKD Foundation |

Living with polycystic kidney disease

By MaryKatherine Michiels-Kibler This article originally ran in the August 2014 issue of Kansas City Health and Wellness magazine. Five years ago, at age 13, I was diagnosed with polycystic kidney disease (PKD) after a series of visits to the […]

PKD Foundation |