pkDO Media Center

After more than 40 years of research, PKD is still incurable, but with IVF and Preimplantation Genetic Testing (“PGT”) that has been around for over 25 years, there are steps that can be taken to prevent PKD from being passed down to future generations.

The PKD Outreach Foundation (pkDO), a Westbury, NY-based non-profit organization, is committed to ensuring future generations do not suffer from PKD and the emotional toll it takes on families. To this end, the organization launched the 100 PKD-Free Babies initiative in the summer of 2023. The program raises awareness through outreach to the public and medical community. Families participating in the program receive education, support and $3,000 per patient to cover part of the cost of PGT, which is not covered by a patient’s own insurance.

The overall goal of the program is to reduce the number of babies born with PKD from approximately 7,500 per year to 0. The 100 PKD Free Babies initiative will fund pre-implantation genetic testing (PGT-M) for 100 families, to enable a new generation of children to be born without PKD.

Polycystic Kidney Disease is a genetic condition that results in cysts on the kidneys which grow and often results in kidney failure by the time the patient is in their late 40s or 50s. PKD is the fourth leading cause of kidney failure in the US, with about 70 percent of the cases undiagnosed until it is too late. Since the PKD gene is dominant, those who are carriers have a 50 percent chance of passing the disease down to their children. Signs and symptoms of ADPKD often develop between the ages of 30 and 40. Only one parent needs to have the disease for it to pass to their children.

“My wife Jo had Polycystic Kidney Disease, as did her mother, her sister, our two kids and other relatives in the family. In all cases, their native kidneys failed by the age of 50. I have personally committed to funding all the start-up and operational costs to incubate this initiative so that all third-party donations go towards ensuring that every patient gets the funding they need. I am focused on this, and it has become my life’s work,” added Kellner. “It is untrue that there is ‘nothing to do but wait’ for kidney failure and it is pkDO’s mission to provide awareness and affordable access to solutions to end this disease. By raising awareness and with partnerships we will achieve our goal of eliminating PKD,” added Kellner.

For more information about the 100 PKD-Free Babies Initiative, please visit https://www.pkdo.org/babies

About pkDO Research Foundation

The PKD Outreach Foundation (pkDO) has a mission to end Polycystic Kidney Disease. pkDO partners with transplant centers, nutritionists, and reproductive specialists to help families find live kidney donors, discover ways to slow the progression of PKD, and to ultimately eliminate PKD from being passed down to the next generation. Our partners are the top experts in their fields and use the latest proven treatments for PKD.

For more information about the pkDO Foundation, please visit https://www.pkdo.org/