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

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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

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Firefly Chat Episode 5: NNPDF

Firefly Fund founders Pam and Chris Andrews celebrate NPC Awareness Month by having a conversation with National Niemann-Pick Disease Foundation, Inc., Executive Director Joslyn Crowe, MSW, MA, and NNPDF Board…Read More

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Firefly Chat Episode 4: Newborn Screening

This month’s episode of Firefly Chat focuses on Newborn Screening Awareness Month. The podcast was repurposed from a discussion at the recent World Orphan Drug Congress, featuring speakers Firefly Fund…Read More

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Firefly Chat Episode 3 (Part 2): Orphazyme

Tune in for the second installation of Firefly Fund Co-Founders Pam & Chris Andrews’ conversation with Thomas Kirkegaard Jensen Ph.D., Co-Founder and Chief Scientific Officer and Kim Stratton, CEO of Orphazyme, a…Read More

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Firefly Fund’s Gift to Rush University Medical Center Provides NPC Treatment for Underserved Families

Firefly Fund contributes to Rush University Medical Center’s Families Helping Families Pediatric Neurology Rare Disease Patient Access Fund. The fund, which is under the direction of neurologist Dr. Elizabeth M….Read More

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NPC Newborn Screening Initiative Presents at NNPDF Annual Family Conference

Firefly Fund’s NPC Newborn Screening Initiative had the opportunity to deliver a presentation at this year’s NNPDF Family conference, updating participants on the latest activities with this important community activity….Read More

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Firefly Chat Episode 3 (Part 1): Orphazyme

Firefly Fund Co-Founders Pam & Chris Andrews enjoyed their recent Firefly Chat with Thomas Kirkegaard Jensen Ph.D., Co-Founder and Chief Scientific Officer of Orphazyme and Kim Stratton, CEO of Orphazyme. We know you will…Read More

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Chris Andrews and Firefly Fund Highlighted in Reader’s Digest

Reader’s Digest featured Chris Andrews in a Father’s Day story about exceptional dads. The online article highlighted the Andrews family’s rare disease journey, the founding of Firefly Fund, and Chris’ special…Read More

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Firefly Chat Episode 2: John Crowley, Chairman & CEO of Amicus Therapeutics

Join Firefly Fund founders Pam and Chris Andrews as they speak about the future of rare disease treatment with John Crowley, Chairman and CEO of Amicus Therapeutics — a global,…Read More

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