July 2025 Newsletter
Countdown to PKD Awareness Day & Month
We are less than six weeks away from PKD Awareness Month (September) and PKD Awareness Day (September 4th).
This is a meaningful time to come together, amplify the voices of those impacted by PKD, and raise awareness about generational health.
As we gear up for a month full of education, support, and advocacy, we invite members of the PKD-Free community to get involved. Whether you're passionate about sharing your story, interested in sharing our educational flyer with your healthcare provider/clinic, or simply happy to spread the word about our efforts, your involvement can make a big impact. If you'd like to learn how you can help, please don’t hesitate to reach out to our CIOO, Kevin Schnurr, by email.
In the interest of spreading awareness (and fulfilling requests from many within our community) we're proud to share our new, online apparel store via Bonfire. As an added bonus, a small portion of your purchase directly supports our PKD-Free Babies program.
Bonfire prints our official merchandise on demand and ships domestically and internationally. Our shop currently offers an adult pullover hoodie, adult unisex tee, adult long sleeve tee, a youth tee, and a women's slim fit tee in multiple color choices. Sizes fit as expected, except the women’s slim fit tee (see "Size and Fabric Info" for upsizing suggestion).
Stay tuned — we plan on adding new items to our store later this year!
Alliance "Spokesmom" and Husband Spread Education and Awareness
In a heartwarming feature story in Colorado Parent and a touching Fox 31’s Great Day Colorado segment, the Rogina family shared how the PKD-Free Alliance helped them stop the cycle of polycystic kidney disease (PKD) in their family.
After Natasha Rogina’s diagnosis, she and her husband Anthony pursued IVF with preimplantation genetic testing (PGT-M) to ensure their future children would be PKD-free. Thanks to a grant from the PKD-Free Alliance, they received financial support for fertility treatments and genetic screening.
"It’s not for everyone, but for us, that’s the decision we made, that if there’s a way we can try to prevent our children from having this disease… we want to explore that," says, Anthony.
Now parents to a healthy daughter, Juliana, Natasha serves as the Alliance’s Chief Spokesmom, using her voice to inspire and educate other families navigating PKD.
Read the Colorado Parent article at this link.
Click the video preview below to watch the Great Day Colorado segment.
Visit our website to learn more about grant funding for IVF and PGT-M.
PKD Research Roundup
Earlier this month, Renasant Bio announced $54.5M in seed funding raised to advance next-generation disease-modifying treatments for autosomal dominant polycystic kidney disease (ADPKD).
The July issue of the American Society of Nephrology's Kidney News includes discussion around the utility of genetic testing in ADPKD.
A recent article in Kidney International Reports provides an overview of cardiovascular complication in patients with ADPKD, with an emphasis on early detection.
