PKD-Free Alliance Reaches Milestone of 200 Families Supported on Their Journey Toward a PKD-Free Future

Growing nonprofit provides education, guidance and grants to families seeking to prevent Polycystic Kidney Disease from being passed to future generations

NEW YORK, NY, UNITED STATES, August 27, 2026 /EINPresswire.com/ -- PKD-Free Alliance, a New York-based nonprofit organization, has reached a major milestone: more than 200 families affected by Polycystic Kidney Disease (PKD) have now received education, guidance and/or financial support from the organization as they explore opportunities to prevent the disease from being passed to future generations.

The milestone reflects the Alliance’s growing geographic reach, with families supported across 43 U.S. states and four Canadian provinces. PKD-Free Alliance provides families with education and guidance about PKD genetics, reproductive options, fertility providers and genetic testing, as well as financial assistance for eligible families pursuing in vitro fertilization (IVF) with preimplantation genetic testing for monogenic disorders (PGT-M). Through IVF, embryos are created and PGT-M can identify those that have not inherited the familial PKD-causing genetic variant before embryo transfer. For families who successfully complete this process, the result can be life-changing: a child born free of PKD.

Among the families supported by the Alliance, 34 PKD-free children have been born and 19 pregnancies are currently underway, demonstrating the tangible impact that greater awareness and access to reproductive options can have for families affected by this disease.

Founded by Long Island resident Richard Kellner, PKD-Free Alliance was created from a deeply personal mission. Kellner's wife, Joanne, lived with PKD, a genetic disease that causes fluid-filled cysts to grow in the kidneys, damaging healthy kidney tissue and reducing kidney function over time. PKD is the fourth leading cause of kidney failure in the United States and can also cause complications outside the kidneys, including liver cysts and an increased risk of brain aneurysms.

His experience with the disease and its impact on families led him to establish an organization focused on giving future generations the opportunity to live free from PKD. It can affect generations of a family, but today's families have reproductive options that previous generations did not.

“Reaching 200 families is an incredibly meaningful milestone for PKD-Free Alliance because every family represents another opportunity to change the future of this disease,” said Richard Kellner. “Whether a family comes to us for information, help understanding their reproductive options, connections to providers or financial assistance, our goal is to make sure they know they have options. The 34 PKD-free children already born and 19 pregnancies underway show what’s possible when families have direct access to that knowledge and support.”

The organization continues to expand its outreach and build relationships with healthcare professionals, PKD specialty centers, nephrologists, fertility specialists, genetic testing providers and other medical professionals who work with individuals and families affected by PKD. These relationships are designed to increase awareness of reproductive options and connect families with appropriate information and providers.

PKD-Free Alliance also works directly with families at different stages of their journey, from individuals who have recently learned about the hereditary nature of PKD to couples exploring IVF and genetic testing and families already moving through the process.

“Working directly with families affected by PKD every day gives me the opportunity to see how much it matters simply to have someone there to answer questions, share resources, and help make the next step feel more manageable,” said Melinna Sanchez, Community Outreach Manager at PKD-Free Alliance. “Every family comes to us at a different point in their journey, and being able to support them as they learn about their options and move toward the possibility of a PKD-free future is incredibly rewarding. Reaching 200 families makes me especially excited about how many more we can help.”

The organization's growing momentum comes as September is recognized as PKD Awareness Month and September 4 is PKD Awareness Day, providing an important opportunity to increase public understanding of PKD, its hereditary nature, and the reproductive options now available to families.

Autosomal dominant PKD (ADPKD), which accounts for approximately 90% of PKD cases, is the most common inherited kidney disease. Because it is genetic, each child of a parent with ADPKD generally has a 50% chance of inheriting the disease-causing variant. Today, advances in reproductive medicine give families options to reduce the likelihood of passing PKD to future generations.

For Kellner and PKD-Free Alliance, the long-term vision extends beyond supporting individual families. The organization seeks to build awareness among patients and the medical community so more people understand that there are options available to help prevent PKD from continuing from one generation to the next.

“Families deserve to know that these options exist,” Kellner said. “Our mission is to reach more families, expand access, and work with the medical community so that one day PKD is no longer a disease passed from parents to their children.”

To learn more about PKD-Free Alliance and its grant program, visit www.pkdfree.org.

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About PKD-Free Alliance

PKD Free Babies Alliance, Ltd. (PKD-Free Alliance) is a 501(c)(3) non-profit organization (EIN 87-1389001) dedicated to ending Polycystic Kidney Disease (PKD) by using proven approaches to prevent it from being passed down to future generations. The organization supports impacted families by providing information about reproductive options and providers, guidance throughout the process, and financial grants for qualified families to cover a portion of the costs associated with in vitro fertilization (IVF) and preimplantation genetic testing for monogenic disorders (PGT-M).

The organization was started by Richard Kellner in 2022 in memory of his late wife who had PKD. More than 50 medical centers, fertility clinics, genetic companies, and advocacy organizations have aligned themselves with the Alliance’s mission to enhance generational health. To learn more about PKD-Free Alliance and its grant program, visit www.pkdfree.org.

Bill Corbett Jr.
Corbett Public Relations
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