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
Read MoreThe 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
Read MoreAustin 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
Read MoreFirefly 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
Read MoreNPC 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
Read MoreChris 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
Read MoreFirefly 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
Read MoreBelle 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
Read MoreAndrews 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
Read MoreOpportunity 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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