August 2026 Newsletter
Celebrating 200 Families...and Growing!
We're proud to share an exciting milestone: more than 200 families affected by PKD have now turned to PKD-Free Alliance for education, guidance, and/or financial support on their journey toward a PKD-free future!
Our reach now extends across 43 U.S. states and four Canadian provinces, and most importantly, 34 PKD-free children have been born to date, with another 19 pregnancies currently underway.
We're incredibly grateful to every family, healthcare professional, and supporter who has helped us reach this milestone. Together, we're building greater awareness of reproductive options and helping more families envision and realize a future free from PKD.
Help Your Family Know Their Options
September is PKD Awareness Month, and one of the most powerful ways you can help us reach even more families is by starting a conversation.
Our new resource, "5 Things Every PKD-Impacted Family Should Know," provides an easy-to-understand overview of how PKD is inherited, diagnosis and genetic testing, family-planning options, IVF with PGT-M, and resources available to families through PKD-Free Alliance.
This September, consider using this resource as a conversation starter with parents, siblings, cousins, and other loved ones affected by, or at risk for, PKD. Talk about it over the phone, bring it up the next time you're together, or send the link by text or email after you've connected.
A meaningful conversation, followed by a resource they can explore on their own, could introduce someone you care about to information and options they never knew existed.
Mark Your Calendars: Upcoming PKD Events
September and October bring several opportunities to learn, connect, and get involved with the larger PKD community. While many of the in-person events below are in the New York area, where PKD-Free Alliance is based, we're especially excited to highlight a virtual educational program that is open to patients, families, and healthcare professionals nationwide.
Friday, September 4: PKD Awareness Day 2026: Current & Emerging Perspectives in ADPKD (Virtual CME Event)
This online educational program hosted by Columbia Medicine offers CME credit for eligible healthcare professionals, but patients and families from across the country are also welcome and encouraged to attend at no cost. Learn more.
Saturday, September 26: Long Island Walk for PKD (Holtsville, NY)
Join patients/families, friends, and supporters from across the Long Island PKD community for PKD Foundation's annual Walk for PKD. Meet PKD-Free Alliance's CIOO Kevin and enjoy the beautiful Holtsville Ecology Site following the walk. Learn more.
Sunday, October 4: NYC Together for PKD Walk (New York, NY)
Connect with fellow families during a community walk along the East River Esplanade, followed by opportunities to interact with participating organizations (including PKD-Free Alliance) and healthcare professionals. Learn more.
Sunday, October 18: Rogosin Institute PKD Open House (New York, NY)
The Rogosin Institute, a PKD Center of Excellence, will welcome patients and families to its annual PKD Open House. Attendees can meet members of the care team, connect with others impacted by PKD, and learn about family planning options during a session moderated by Alliance staff. Learn more.
If you have questions about any of these events, email Alliance CIOO Kevin Schnurr at ks@pkdfree.org.
Research Roundup
A new review published in the American Journal of Physiology-Endocrinology and Metabolism explores how β-hydroxybutyrate (BHB), a ketone body produced during ketosis, may have kidney-protective effects in ADPKD, including potentially reducing cyst proliferation, inflammation, and fibrosis while supporting mitochondrial function.
A large U.S. study published in the Clinical Journal of the American Society of Nephrology (CJASN) examined more than 53,000 people with ADPKD and kidney failure and found that peritoneal dialysis was associated with lower mortality and a greater likelihood of kidney transplantation compared with hemodialysis, supporting it as an important treatment option for appropriate ADPKD patients.
New research published in the Journal of Clinical Investigation identified a potential therapeutic approach to ADPKD by targeting molecular mechanisms that limit production of Polycystin-1, the protein encoded by PKD1. In mouse models, removing these molecular "brakes" increased Polycystin-1 levels and prevented kidney cyst formation, offering a promising avenue for future treatment research.
Follow PKD-Free Alliance's X account to be the first to know about scientific announcements and newly published research. Note: You may need to sign in to your X account to see our posts.
