Firefly Fund: Shining a Light on NPC
Firefly Fund is a global leader in providing support, resources, and reassurance to families living with rare neurodegenerative genetic diseases like Niemann-Pick Disease Type C that affect children and currently…Read More
Dan Rather speaks on behalf of the Firefly Fund
Please consider making a donation at Firefly.Fund/JoinTheFlight. Your donations fund new drug therapies that can slow the progression of Niemann-Pick Disease Type C and other neurodegenerative diseases that cut short…Read More
What is NPC?
Ahead of World Rare Disease Day 2020, Firefly Fund’s founders and researchers explain about Niemann-Pick Disease Type C (NPC) and how you can join the flight to help fund and…Read More
Latest News & Events
Austin American-Statesman Features Firefly Fund’s Work in Newborn Screening
The Austin American-Statesman featured Firefly Fund’s work on newborn screening for NPC. The online article highlighted the ScreenPlus program, that with Firefly Fund’s support, recently launched at Children’s Hospital at…Read More
Firefly Chat Episode 6: Mallinckrodt Pharmaceuticals
Firefly Fund founders Pam and Chris Andrews chat with the Mallinckrodt team. Dr. Steve Romano, Elissa Cote, and Sheila Talafous share their journies to joining the Mallinckrodt team, how rare…Read More
Raised
Our Fundraising Goal
As of July 1, 2020 Firefly Fund has raised $519,039.65 towards its 1M goal for 2020.
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