Nancy Stack, Founder & President

Cystinosis Research Foundation, Irvine

Driven by the determination to find better treatments and a cure for her daughter Natalie's rare and life-threatening genetic disease, Nancy Stack founded the Cystinosis Research Foundation (CRF) to support bench, clinical and translational research for people living with cystinosis. Since 2003, Stack and her team have worked hard to raise awareness of cystinosis and garner worldwide support for research, funding 206 multi-year research grants in 12 countries with 88 final research study results published in prestigious scientific journals. CRF's research grant funding efforts have resulted in one of their researchers, Dr. Stéphanie Cherqui at UCSD, being awarded with FDA-approval for a stem cell gene therapy clinical trial to test a potential cure for cystinosis. To-date, the trial has been a remarkable success, with all three trial patients no longer in need of cystinosis medications.