From Personal Loss to a Mission to End PKD

We’re honored to be featured in a new in-depth story from Island Edge Business News exploring the deeply personal story behind PKD-Free Alliance and the growing impact of our mission. The article shares how founder Richard Kellner’s experience with PKD in his own family—and the loss of his wife, Joanne—led him to build an organization dedicated to helping families understand and access the option of IVF with PGT-M to prevent an identified PKD-causing variant from being passed to the next generation.

The story also follows Kate and Ryan Montgomery, whose two-year journey included four egg retrievals and three embryo transfers before welcoming their daughter, Charlotte, from an embryo that tested negative for their family’s identified PKD variant. Their experience illustrates both the promise of this option and the financial, emotional, and logistical challenges families can face along the way. Their journey illustrates why education, financial assistance, and community support are so central to the work of PKD-Free Alliance.

The article also features insights from PKD-Free Alliance CIOO Kevin Schnurr on the importance of awareness, access, and supporting families wherever they are in the process, as well as Dr. Heedeok Han, Director of the Polycystic Kidney Disease Center at Columbia University, who provides important medical context on PKD, inheritance, and the reproductive options available to affected families.