Sept. 2025 Newsletter
PKD-Free Provides Seed Funding for Specialty Clinic
Earlier this month, University of Utah Health announced the opening of a new specialty clinic focused exclusively on providing care to PKD patients. The launch of the PKD Specialty Clinic was made possible in part by a donation from PKD-Free Alliance.
One of the key objectives of the clinic is to educate PKD families about ways to prevent the disease from continuing in future generations.
“As part of our mission, it is critical that individuals and families impacted by this disease have access to accurate information about care and solutions that enhance generational health,” noted Richard Kellner, founder of PKD-Free Alliance. “Having specialty care for PKD patients at University of Utah Health, a location that shares the goals of PKD-Free Alliance, is important and personal to me and my family."
"We’re proud to lead the way in both caring for patients today and working toward a healthier future for those with PKD. We appreciate and thank the PKD-Free Alliance for their support for the clinic and our initiatives," said Steve Sammons, MD, assistant professor of internal medicine in the Division of Nephrology & Hypertension and director of the PKD Clinic at University of Utah Health.
A Morning of Connection and Hope at PKD Walk
On Saturday, September 20th, PKD-Free's CIOO, Kevin Schnurr, represented the Alliance at the annual Long Island Walk for PKD in Holtsville, New York.
Close to 100 patients, family members, and supportive friends gathered at the Holtsville Ecology Site and Animal Preserve to stroll the scenic trail in solidarity and mingle underneath the park pavilion.
Throughout the event, dozens of participants interacted with Kevin at the Alliance's table sharing diagnosis and misdiagnosis stories, transplant experiences, and hope for the next generation. He educated attendees about our mission to improve generational health, distributing informative flyers and business cards so families could share with their own network of patients and providers.
The Alliance extends heartfelt gratitude to Ellie Thien, Community Development Strategist, at PKD Foundation and Long Island Walk for PKD coordinator Gillian Kolodny for their invitation and hospitality.
New Additions to Our Website
As PKD Awareness Month winds down, we are pleased to share some important updates to the Alliance website, pkdfree.org.
Our Allies & Resources page now includes a readily accessible vocabulary terms and definitions listing for common phrases associated with PKD management and family planning considerations. Read through the entries to speak with confidence during your next care appointment!
Our News & Media page is fully up-to-date with the numerous media appearances PKD-Free families have recently participated in. View the page to hear from families who, through the use of Alliance grant funding and assisted reproductive technology, were able to actualize a PKD-free birth.
PKD Research Roundup
A newly published article in Pediatric Nephrology reviews health-related quality of life, as well as associated caregiver burden, in children with Autosomal Recessive Polycystic Kidney Disease (ARPKD).
Volume 86, Issue 3 of the American Journal of Kidney Diseases
includes "Polycystic Kidney Disease in Children: The Current Status and the Next Horizon," an overview of clinical manifestations of ARPKD and Autosomal Dominant Polycystic Kidney Disease in pediatric patients, genetic testing, transition of care to adulthood, and more.
Degrees of Research podcast released a fascinating discussion with Thomas Weimbs, PhD, a PKD researcher, professor and Vice Chair in the Department of Molecular, Cellular, and Developmental Biology at UC Santa Barbara. The conversation covers dietary considerations, ketones, and the state of nutritional ketosis in chronic kidney disease patients and its impact on renal function. Watch the full interview below.
