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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Firefly Fund OpEd Featured by Global Genes’ Rare Daily

Global Genes’ Rare Daily featured an OpEd written by Firefly Fund Co-Founder and Executive Director Pam Andrews and Firefly Fund’s Newborn Screening Initiative Leader Allison May Rosen. The article highlighted the…Read More

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Belle and Abby’s Story Featured by Children’s Hospital Association

The Children’s Hospital Association featured Belle and Abby in a story about NPC treatment. The newsletter article highlighted the Andrews family’s rare disease journey, the founding of Firefly Fund, and how…Read More

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Firefly Chat Episode 1: Welcome to Firefly Chat

Join Firefly Fund founders Pam and Chris Andrews as they share about their own personal rare disease journey that led them to the creation of Firefly Fund, as well as…Read More

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Andrews Family Featured on Spectrum News Austin

Spectrum News Austin featured Belle and Abby in a story about NPC. The  video segment highlighted the Andrews family’s rare disease journey, the founding of Firefly Fund, and all that…Read More

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Opportunity for NPC Families to Volunteer for NBS Initiative: Call for Participation from the NPC Newborn Screening Working Group

The NPC community is engaged in a multi-stakeholder effort to add NPC to newborn screening lists across the country. Since adding NPC to these lists would mean that all newborns would…Read More

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Firefly Fund Postpones Annual Newborn Screening Clinical Roundtable Amid COVID-19 Concerns

Following the advice of our nation’s public health experts and recognizing the rapidly evolving situation that we all find ourselves in both at work and at home, we have decided…Read More

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Firefly Fund Releases Inaugural Report to Donors

We are excited to present our donors with this inaugural report and hope you are as proud as we are of the progress we’ve made over the last three years….Read More

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Meeting the Newborn Screening Requirements

The NPC community is engaged in a multi-stakeholder effort to add NPC to newborn screening lists across the country. Since adding any new condition to these lists would mean that any newborn…Read More

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Wrapping Up Year of Progress: Advancing Newborn Screening for NPC

Firefly Fund’s Newborn Screening Working Group completed its final meeting of the year in December — the Annual Stakeholder Meeting. While in Washington, D.C., the Working Group reviewed the year’s…Read More

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