August 2025 Newsletter
Indiana Couple Celebrate PKD-Free Birth
Hazel Sue Payne was born free of polycystic kidney disease on May 28th. Her parents, Marcus and Callie Payne of Whitestown, Indiana, made a courageous decision to break the cycle of PKD that has affected generations of Marcus’s family. Through IVF with preimplantation genetic testing, they ensured their child wouldn’t inherit the disease that has required Marcus to undergo two kidney transplants.
On August 22nd, WTHR 13 News spotlighted the Payne's fertility journey and included brief remarks from PKD-Free Alliance CIOO Kevin Schnurr.
Through the Alliance, the Payne family found both financial relief and a community committed to rewriting futures.
This WTHR story highlights the power of science, compassion, and determination to improve generational health. Callie and Marcus hope to grow their family, with three more PKD-free embryos in storage.
Watch the full WTHR 13 News segment below.
Visit our website to learn more about grant funding.
Mother of Alliance "Spokesmom" Shares PKD Family History in Heartfelt Blog Post
Patricia was only 17-years-old when she was diagnosed with PKD, adding to the long lineage of affected family members.
"My biggest fear wasn’t just living with the disease; it was the 50/50 chance of passing it on to my children as PKD is an autosomal dominant disease in my family, and that knowledge weighed heavily on me," she notes.
In a new blog post for Patient Worthy, Patty describes the "waiting game" of her disease progression and how a selfless act of living kidney donation from her husband via a paired donor exchange allowed her to receive the Gift of Life eight years ago at age 52.
Patty is the proud mother of Alliance "Spokesmom" Natasha and grandmother of PKD-free granddaughter, Juliana. Natasha and her husband Anthony welcomed Juliana in December 2023, utilizing assisted reproductive technology with Alliance grant funding.
With September's PKD Awareness Month only a few days away, the entire family is pleased to share Juliana will be a big sister to a PKD-free sibling next year!
Patty, Juliana, and Natasha (left to right)
Juliana is excited to welcome her sibling in early 2026!
Virtual Education Event on PKD Awareness Day
We are pleased to share that Heedeok Han, MD, Clinical Director of Columbia University Irving Medical Center's PKD Center (recognized as a PKD Foundation Center of Excellence) is hosting a virtual event on Thursday, September 4th in honor of PKD Awareness Day. The all-day program, free for patients and family members to attend, will focus on the latest KDIGO guidelines, with specialists leading discussions on genetics, imaging, clinical management, and nutrition. It's a wonderful opportunity to stay connected and informed about PKD from the comfort of your home. Note: ACCME credits are available for clinicians.
PKD Research Roundup
Last month, Kidney360 shared the results of a study which concluded that peritoneal dialysis is a safe and feasible treatment for autosomal dominant polycystic kidney disease (ADPKD) patients.
The current issue of The Nephrology Journal provides a comprehensive overview of ketogenic diets in ADPKD patients, including considerations for clinical trial designs.
