NEWS MEDIA RELEASE

Rare Kidney Disease Foundation

August 22, 2025

For more information: [email protected]

The Rare Kidney Disease Foundation (RKDF) - a patient-focused non-profit organization dedicated to HALTING the devastating impacts of Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD) by supporting physician-researchers in their quest to find a treatment and, eventually, a cure - has named Lisa Parcell as its Deputy Director.

“Lisa excels at translating RKDF’s mission into action, from re-establishing and leading the Ambassador Program, to taking on the role of Treasurer, to overseeing RKDF’s website upgrade,” reports Richard Nelson, Chair and Co-Founder of the RKDF. “We joke that she's been serving in a Deputy Director role for months, so it was about time we made it official.”

“Lisa has demonstrated outstanding leadership skills and a desire to do whatever it takes to spread the word about ADTKD,” remarks Katherine Blakeslee, Senior Director of Strategy & Operations at Atlas Venture NewCo and a Trustee on RKDF’s Board of Directors. “She is a true partner, and I look forward to our continued work together.”

“I am truly honored to step into the role of Deputy Director at the Rare Kidney Disease Foundation. ADTKD remains critically under-recognized in both the medical and patient communities, despite its devastating impact on families across generations. As an ADTKD-UMOD patient, I am deeply committed to RKDF's mission to urgently scale awareness and grow the International ADTKD Patient Registry in preparation for an upcoming clinical trial,” Lisa stated.

Lisa received a successful kidney transplant in December 2020 after years of managing chronic kidney disease. Through her interest in genealogy, she discovered that she is the fifth generation in her family with chronic kidney disease, a history that has shaped her perspective and advocacy. Lisa brings over 25 years of management and leadership experience. She is passionate about ADTKD advocacy, raising awareness, and advancing efforts to find a treatment and, ultimately, a cure for ADTKD.

As Deputy Director, Lisa will work with RKDF’s Executive Director, Sharon McGroder, to oversee the foundation’s daily operations, develop its annual budget and strategic plan, and monitor progress and performance. Lisa will also continue to lead RKDF’s Ambassador Program, which engages RKDF volunteers across the U.S. and Canada to meet with nephrologists in their communities to scale awareness of ADTKD and genetic testing.