Firefly Fund Commits $500K to Novel Newborn Screening Study That Will Help Identify Rare Diseases at Birth

FOR IMMEDIATE RELEASE: May 10, 2021 CONTACT:  Pam Andrews pam@fireflyfund.org Austin Nonprofit Commits $500K to Novel Newborn Screening Study That Will Help Identify Rare Diseases at Birth  Pilot Study enrolls…Read More

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The Wall Street Journal Features Andrews’ NPC Journey

Amy Marcus of the The Wall Street Journal featured the Andrews’ journey with Niemann-Pick Type C (NPC) and the investigational medication referred to as Adrabetadex (VTS-270). The article also highlighted…Read More

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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 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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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 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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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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