PKD-Free Alliance tops 200 families supported in disease-prevention effort

PKD-Free Alliance says it has now supported more than 200 families across the U.S. and Canada as they look to prevent polycystic kidney disease from being passed to future generations. The milestone comes as PKD Awareness Month approaches and highlights growing use of IVF with preimplantation genetic testing to reduce inherited risk.

Why it matters: - PKD-Free Alliance is helping families make reproductive choices that can lower the chance of passing polycystic kidney disease to children. - The milestone underscores how genetic testing and IVF are being used to shift PKD from a condition inherited by future generations to one families can try to prevent. - The nonprofit says 34 PKD-free children have already been born through supported families, with 19 pregnancies currently underway.

What happened: - PKD-Free Alliance said it has now supported more than 200 families affected by polycystic kidney disease. - The New York-based nonprofit said those families span 43 U.S. states and four Canadian provinces. - Support has included education, guidance and financial help for eligible families pursuing IVF with preimplantation genetic testing for monogenic disorders, or PGT-M. - The group marked the milestone as September approaches, when PKD Awareness Month and PKD Awareness Day on Sept. 4 draw attention to the disease.

The details: - PKD-Free Alliance helps families understand PKD genetics, reproductive options, fertility providers and genetic testing. - Through IVF, embryos are created and then screened with PGT-M to identify those that did not inherit the familial PKD-causing genetic variant before embryo transfer. - PKD-Free Alliance said its support has led to 34 PKD-free children and 19 ongoing pregnancies. - Richard Kellner, a Long Island resident, founded the organization after his wife, Joanne, lived with PKD. - PKD causes fluid-filled cysts to grow in the kidneys, damaging healthy tissue and reducing kidney function over time. - PKD is the fourth leading cause of kidney failure in the United States. - The disease can also cause liver cysts and raise the risk of brain aneurysms. - Autosomal dominant PKD, or ADPKD, accounts for about 90% of PKD cases. - A child of a parent with ADPKD generally has a 50% chance of inheriting the disease-causing variant. - The organization said more than 50 medical centers, fertility clinics, genetic companies and advocacy organizations have aligned with its mission. - PKD-Free Alliance was started in 2022 in memory of Kellner’s late wife. - The organization operates as a 501(c)(3) nonprofit under the name PKD Free Babies Alliance, Ltd. - More information is available at the organization’s website. - The group also shared social media links on LinkedIn, Instagram, Facebook, YouTube, TikTok and X.

Between the lines: - The nonprofit is trying to build awareness among patients, clinicians and fertility specialists so families learn about reproductive options earlier in the journey. - The 200-family mark suggests growing demand for guidance and funding tied to inherited disease prevention. - PKD Awareness Month gives the organization a timely platform to reach more families and medical professionals. - The mission reflects a broader shift in genetic medicine toward helping families avoid passing inherited disease to the next generation.

What's next: - PKD-Free Alliance says it will keep expanding outreach to nephrologists, fertility specialists, genetic testing providers and PKD specialty centers. - The nonprofit also plans to keep working directly with families at different stages, from first learning the disease is hereditary to moving through IVF and testing. - Kellner said the long-term goal is to reach more families, expand access and work with the medical community until PKD is no longer passed from parents to children. - The organization says it will continue seeking to increase awareness and connect families with providers and financial support where eligible.

The bottom line: - PKD-Free Alliance has moved from a niche support effort to a growing network helping families use reproductive medicine to interrupt the inheritance of PKD.