Overview of the Foundation
The Firefly Fund is a 501(c)3 nonprofit organization founded in 2017 that provides crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children and currently have no cure. Building on our work to advance knowledge and access to therapy for children diagnosed with Niemann-Pick Disease Type C (NPC), we support research to translate these learnings across other rare and ultra-rare diseases. Headquartered in Austin, Texas, Firefly Fund leads a collection of programs including Early Diagnosis, Research and Access. These programs offer resources, support and reassurance to rare disease families.
The organization is led by patient advocates with lived experience navigating rare disease diagnoses and treatment. We hope you will join us, as we convene an inaugural coalition of stakeholders committed to advancing and accelerating access to life-saving and life-changing therapies for rare disease patients.
Our Mission
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.
”
Key Programs
Early Diagnosis
Research
Access
Our Leadership
We are honored to have the time, dedication, and leadership of the Board of Directors and staff.
Our Lived Experience
Parents Pam and Chris Andrews noticed their eldest daughter Belle was showing developmental delays in gross and fine motor skills and coupled with other concerns they had such as a swollen spleen and low platelets, the parents and their young daughter began a multi-year diagnostic odyssey that spanned over a dozen therapists and medical specialists.