Overview of the Foundation
Firefly Fund is a 501(c)3 nonprofit organization founded in 2017 to fund the research and education necessary to accelerate a cure for rare neurodegenerative genetic diseases that affect children and currently have no cure — starting with Niemann-Pick Disease Type C (NPC). Headquartered in Austin, Texas, Firefly Fund leads a collection of programs including Newborn Screening, Translational Medical Research, and the Patient Access Fund. These programs offer resources, support, and reassurance to NPC families. A rare disease diagnosis is unimaginable, but together we will find a cure.
Firefly’s mission is inclusive of all rare neurodegenerative genetic diseases that affect children and have no cure. Our long-term strategy has always been to use our learnings from our initial work for NPC, and where our work can be translated across other rare neurodegenerative genetic diseases, we will be prepared to focus on those diseases as appropriate.
Our mission is to fund and support the research and education necessary to accelerate a cure for rare neurodegenerative genetic diseases that affect children and currently have no cure. We have begun our journey with a focus on Niemann-Pick Disease Type C.
Translational Medical Research
Our Board of Directors
We are honored to have the time, dedication, and leadership of the Board of Directors.
Belle & Abby’s Story
A couple of years ago, parents Pam and Chris Andrews noticed their oldest daughter, Belle, was showing some developmental delays, specifically manifesting in her gross and fine motor skills. Because she was so young, the delays were subtle and it was hard to know what was normal development and what was cause for concern. But Pam and Chris’s instincts continued to tell them something was abnormally wrong with their daughter.