Firefly Fund
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The Firefly Fund is a nonprofit organization based in Austin, Texas. They are dedicated to accelerating the research and education for cures of rare diseases in children. The inspiration behind the Firefly Fund came after parents Pam and Chris Andrews discovered that both of their daughters, Belle age six and Abby age two, had Niemann-Pick Type C1(NPC1) in early 2016. NPC1 is a progressive neurodegenerative disease that attacks every cell of the human body and has a lifespan of 12-20 years.
12/17/2025
The Pediatric Priority Review Voucher (PPRV) program’s authorization lapsed a year ago, but advocates hope Congress will pass reauthorization before year’s end.
“What’s at stake is a bunch of kids’ lives, including the lives of my daughters Belle and Abby Andrews,” said Pam Crowley Andrews, Executive Director and Co-Founder of the Firefly Fund.
“Without the vouchers, it’s not realistic or viable for these drugs to make their way through the regulatory process. These vouchers provide real support that is critical for drug development for the ultra rare disease population.”
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Patient advocates urge action on PPRV to help fight rare disease Patient advocates discussed one of the most important factors enabling breakthroughs against rare diseases, the PPRV, at a BIO coffee chat.
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Austin, TX
78735
