Cystinosis Research Foundation

MANAGEMENT

CEO/Executive Director

Founding Trustee and Chair of the Board Nancy Stack

CEO/Executive Director Experience

Driven by the determination to find better treatments and a cure for her daughter Natalie’s rare and life-threatening genetic disease, Nancy and her husband, Geoffrey, founded the Cystinosis Research Foundation (CRF) to support bench, clinical, and translational research for people living with cystinosis. Since 2003, Nancy and her team have worked hard to raise awareness of cystinosis and garner worldwide support for research, funding 256 multi-year research grants in 13 countries, with 122 research articles published in prestigious scientific journals. CRF’s research grant funding efforts have resulted in one of our researchers, Dr. Stéphanie Cherqui at UCSD, receiving FDA approval for a stem cell and gene therapy clinical trial to test a potential cure for cystinosis. To date, the trial has been a remarkable success, with all five adult trial patients doing well. In addition to founding the 501(c)3 nonprofit dedicated to funding research, Nancy has overseen all operations, research grants, family outreach programming, and fundraising for CRF over the past 20 years. Leveraging her leadership, extensive knowledge of cystinosis, and network within the local business and research communities, Nancy has transformed CRF into the world's largest funder of cystinosis research, raising $73 million for research.

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