Oct. 2025 Newsletter
New Interview with Prominent PKD Researcher
The Alliance is pleased to share an exclusive Q&A with Thomas Weimbs, PhD.
Dr. Weimbs is a professor at the University of California in Santa Barbara where he directs a research laboratory focused on polycystic kidney disease, a condition he has been studying for over 25 years. Dr. Weimbs also serves as President and Chief Scientific Officer at Santa Barbara Nutrients (SBN). SBN was launched in 2020 to translate research discoveries into clinical practice to improve kidney health in patients.
A strong advocate for the importance of nutritional management in kidney patients, especially those impacted by PKD, Dr. Weimbs discusses the importance of early intervention, the ketogenic diet compared to the standard American diet, and a research study at Cleveland Clinic supported by PKD-Free.
PKD-Free Engages Families at Rogosin Open House
On Sunday, October 19th, PKD-Free's Founder, Richard Kellner, and CIOO, Kevin Schnurr, represented the Alliance during an Open House for PKD patients at The Rogosin Institute, a PKD Center of Excellence, in Manhattan, NY.
Over 100 patients and family members gathered for an afternoon of education and social connection organized by Clinic Director James Chevalier, MD (pictured with Kevin).
The event featured a series of breakout discussions focused on topics of importance for PKD families. Richard and Kevin co-facilitated conversations on generational health with families in the process of, or exploring, IVF with PGT-M, as a means to prevent passing on PKD to future generations. Other talks explored genetics, dialysis/transplant, and the latest treatment research.
We extend profound gratitude to Dr. Chevalier, Christina Bishop-Feeny, and the entire Rogosin team for allowing us to participate in the Open House.
Alliance Joins Leading Kidney Education Event
For the first time in the organization's history, PKD-Free Alliance will have an exhibitor booth at the American Society of Nephrology's annual Kidney Week to be held November 5-9th at the George R. Brown Convention Center in Houston, TX.
ASN Kidney Week is largely considered the world's premier nephrology conference, bringing together kidney care providers, biopharmaceutical representatives, researchers, patient advocates, and other key stakeholders. The event averages well over 10,000 attendees annually and will present a tremendous opportunity for Alliance Staff to directly educate PKD care providers.
Alliance CIOO, Kevin, will be accompanied by Community Outreach Manager, Melinna Sanchez, at booth 1642.
“Every day I speak with families living with PKD. Sharing their stories and informing nephrology care providers how PKD-Free Alliance is transforming lives is a powerful opportunity. I believe these stories and our message will resonate deeply. At this conference, I will make sure the Alliance’s mission is heard loud and clear. Alliance grants and modern reproductive technology are giving families real options and rewriting futures that once felt out of reach,” said Melinna.
PKD Research Roundup
On October 2nd, Calico Life Sciences LLC announced the U.S. FDA granted Fast Track Designation for ABBV-CLS-628, an investigational therapy for the treatment of Autosomal Dominant PKD.
On September 25th, Vertex Pharmaceuticals announced it initiated AGLOW, a Phase 2 proof-of-concept study of VX-407 for the treatment of Autosomal Dominant PKD. The study, utilizing a first-in-class investigational small molecule corrector, will target a smaller subset of the overall ADPKD community who have specific PKD1 variants.
Organoids are miniature, 3D models of organs created from stem cells and utilized in research settings to help mimic their full-size counterparts. A University of Washington School of Medicine researcher was recognized for his use of this approach in studying PKD and the technique will now become a cornerstone of the Polycystic Kidney Disease Research Resource Consortium.
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