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 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 245 multi-year research grants in 13 countries, with 110 research study articles 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 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 six 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 for the past 20 years. Leveraging her leadership ability, extensive knowledge of cystinosis, and connections within the local business and the research community, Nancy has transformed CRF into the largest fund provider of cystinosis research in the world, raising $70 million for research.

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