FDA approves Aqneursa for NPC

September 24, 2024 FDA approves Aqneursa for NPC Yesterday, the FDA approved AQNEURSA, a second therapy for NPC patients. This approval highlights the power of collaboration and partnership. For the…Read More

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FDA approves Miplyffa for NPC

September 25, 2024 FDA approves Miplyffa for NPC Today is a monumental day for the NPC Community and the first thing Chris and I wanted to do was share it…Read More

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Firefly Fund Announces $5 Million Gift

February 27, 2024 Firefly Fund Announces $5 Million Gift to Create Center for Rare Disease at UT Austin Dell Medical School Austin, Texas – To mark World Rare Disease Day…Read More

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Buy a Cat Lawyer T-shirt today & Join the Flight!

Rod Ponton, AKA the Cat Lawyer, has become an internet sensation, bringing much-needed laughter to people around the world. Mr. Ponton hopes to use the opportunity as a springboard to…Read More

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People Magazine Features Firefly Fund in Documentary

The hopeful and valiant battle that the Firefly Fund  is  taking on was featured in the February 28th issue of People Magazine. The Andrews sisters’ diagnosis and story is told…Read More

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Pro Golfers to Support NPC Research

FORE! Their Future… Help Light the Way. Joslyn and Sean Dobson invite you to join them and other Fund supporters for an exclusive event to raise awareness and funds for…Read More

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Firefly Fund Inaugural Event

Please join us to celebrate the inauguration of the Firefly Fund! Tuesday, February 28, 2017 6:00 – 8:00 pm 3TEN AUSTIN CITY LIMITS LIVE 310 W. Willie Nelson Blvd. #1A Austin,…Read More

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Clinical trial giving one family hope

Dell Children’s Medical Center is giving families hope by opening up the state’s first clinical trial facility to treat an extremely rare condition. Niemann-Pick Type C disease is a genetic disorder that…Read More

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