We’re honored to announce that we’ve partnered with the PKD-Free Alliance (PKD-Free) to help people living with polycystic kidney disease (PKD) prevent the disease from being passed down in families. PKD-Free is a nonprofit organization dedicated to eradicating PKD by preventing its transmission to future generations. Kindbody will serve as a PKD center of excellence providing fertility care and genetic testing services to people living with the disease. We’re incredibly proud of this partnership which has the potential to make a life-changing impact on families affected by polycystic kidney disease.
Our Chief Medical Officer of Genomics and Laboratory Sciences Dr. Amber Cooper sat down with PKD-Free Chief Spokesmom Natasha Rogina to learn more about the organization and the important work they do.
It’s a pleasure to sit down with you today. Will you share more about how PKD-Free was founded?
PKD-Free, formerly known as pkDO, was founded lovingly by Richard Kellner in memory of his late wife, Jo, who had PKD. Jo’s legacy of warmth and generosity became Richard’s driving force to end the generational toll PKD has on families. Unfortunately, more often than not, patients with PKD are never told there is something that they can do to prevent the disease from being passed down to their future children. PKD-Free is changing the narrative, focusing on educating medical professionals and the entire PKD community that there is now a way to end PKD in families. PKD-Free has seen tremendous success. The organization has expanded its grant programs, and thanks to partners like Kindbody, approved PKD Free grant recipients can further offset costs through their generous discount.
Why is this partnership so important?
PKD is a genetic disorder affecting approximately 600,000 individuals in the U.S., leading to kidney failure and other serious health issues. An affected parent has a 50% chance of passing the disease to their child. To combat this, PKD-Free Alliance provides financial assistance to families seeking to conceive children free from disease through preimplantation genetic testing (PGT-M) and in vitro fertilization (IVF). By supporting these reproductive technologies, the organization aims to end PKD in future generations.
How did you become involved and what does your role entail?
In March of 2022, I created an Instagram page (@pkdendswithme) dedicated to sharing my IVF story. I wanted to spread the message that people suffering from PKD can prevent passing the disease down to the next generation. In the summer of 2023, PKD-Free reached out to me on Instagram to discuss their PGT-M grant program. I became involved with PKD-Free right after receiving that Instagram message.
My role as Chief Spokesmom is to help spread the word about PKD-Free’s mission. I connect with individuals and families impacted by PKD to let them know there is a solution. I also work with the media to help spread our message to a bigger audience.
What is your wish for PKD-Free and this partnership? Five years from now what would you like to achieve?
My wish for PKD-Free and this partnership is to help even more families access affordable IVF treatment. I firmly believe that IVF costs are the number one thing holding us back from eradicating this disease in the near future. The average family cannot afford approximately $30,000 for one round of IVF treatment. With this partnership, I hope more couples can learn that PKD can truly end with them.
In five years, I hope to see the number of families supported by PKD-Free increase substantially. I also hope to continue working with incredible IVF clinics like Kindbody to help us eliminate this disease.
Thank you for sharing your story, Natasha. PKD-Free has a beautiful mission and the work that you do will not just change lives today—it will give a lasting legacy of healthier families for many generations
Visit the PKD-Free website to learn more about the organization and to apply for a grant.
