May 2025 Newsletter
PKD-Free Alliance Welcomes Kevin Schnurr in Leadership Role
The PKD-Free Alliance team welcomes Kevin Schnurr as our first Chief Implementation and Operations Officer (CIOO).
With more than a decade of experience in nonprofit leadership, patient engagement, and kidney disease advocacy, Kevin’s expertise will help the Alliance reach families on their journey toward a PKD-free future.
"By the time I was formally diagnosed with hereditary chronic kidney disease (Alport syndrome) in 2012, I already had single-digit kidney function. I subsequently underwent dialysis, a living donor transplant, and a career shift to patient advocacy. I know first-hand the ripple effects kidney disease can have and how important education and support are for affected individuals. I'm honored to bring my dual patient and professional experiences to the Alliance and support its mission to actualize a PKD-free future."
Kevin can be reached by email at ks@pkdfree.org.
New RMA Blog Shines Light on Modern Fertility Tools
Reproductive Medicine Associates (RMA) of New York recently published a blog post, Breaking the Cycle of Polycystic Kidney Disease (PKD) Through Genetic Screening.
Dr. Jovanna Lekovich, Reproductive Endocrinologist and Infertility Specialist at RMA NY, and Dr. James Chevalier, Nephrologist from Rogosin Institute, discuss how genetic screening and modern reproductive technology can end the generational impact of PKD and how resources provided by PKD-Free Alliance can make dreams of a PKD-free future more accessible.
As a national partner of the PKD-Free Alliance, RMA of New York provides pre-implantation genetic testing and IVF services, helping families make informed reproductive choices.
PKD-Free Alliance thanks RMA for its support and partnership.
PKD-Free Founder and Chief Spokesmom Featured on Fertility-Centric Podcast
Richard Kellner, founder of PKD-Free Alliance, and Natasha Rogina, Chief Spokemom and mother to a PKD-free toddler, joined IVF specialists and hosts Dr. Abby Eblen, Dr. Sarah Hudson, and Dr. Carrie Bedient on Fertility Docs Uncensored Podcast. Throughout episode 275, they collectively raise awareness about the possibility of a PKD-free future.
During the 37-minute episode, Natasha shares how she first became aware of the Alliance and describes her subsequent IVF experience, which resulted in the birth of her PKD-free daughter, Juliana.
Richard discusses the overall lack of insurance coverage for genetic testing for embryos and the deeply personal and private nature of family planning. This is why the Alliance is strongly committed to educating and connecting interested families with those who have been through it first-hand.
If you or someone you know has questions about our grant program and/or would like to be connected with a family who has undergone the IVF process, send an email to the Alliance's Community Outreach Manager, Melinna.
Indiana Couple Share Their PKD-Free Journey
PKD-Free Grant Recipients Callie and Marcus Payne are eagerly awaiting the arrival of their PKD-Free baby girl, Hazel Sue.
CBS4 Indianapolis recently caught up with the couple, as well as Dr. Roohi Jeelani of Kindbody. Kindbody is a fertility clinic network and partner of PKD-Free-Alliance with more than two dozen locations across the U.S.
In the brief video segment, Dr. Jeelani discusses the hereditary nature of PKD, while patient and transplant recipient, Marcus, and his partner, Callie, discuss their decision to utilize pre-implantation genetic testing and IVF to prevent passing it on.
The expectant couple proudly share their resilient journey so other PKD-impacted families can make informed decisions about a PKD-free future.
PKD Research Roundup
Following recent FDA approval, Lupin launched the first generic form of Tolvaptan in the United States. In April 2018, JYNARQUE® (tolvaptan) became the first-ever FDA-approved treatment for adults with autosomal dominant polycystic kidney disease (ADPKD).
Novartis announced it has entered into an agreement to acquire Regulus Therapeutics and lead asset farabursen. Farabursen is an investigational microRNA inhibitor to treat ADPKD that recently completed a Phase 1b multiple-ascending dose clinical trial.
