Firefly Fund’s Pam and Chris Andrews Featured on Austin Next Podcast
October 2, 2024 (AUSTIN NEXT) Pam and Chris Andrews joined Jason Scharf’s podcast, Austin Next, a podcast exploring emerging trends, technologies, and their convergence. The episode highlights Firefly Fund’s vision…Read More
Read MoreAustin Family Optimistic After FDA Approves New Drugs
October 6, 2024 (FOX) – Two Austin sisters are fighting a rare genetic disorder, but the recent FDA approval of two new drugs is offering the family a promising path forward….Read More
Read MoreAustin’s IntraBio Gets FDA Approval for Niemann-Pick Type C1 Treatment
October 1, 2024 (AUSTIN AMERICAN-STATESMAN) Six years ago, Austin sisters Belle and Abby Andrews were diagnosed with Niemann-Pick Type C1, a rare genetic disorder sometimes called childhood Alzheimer’s. Belle, who was…Read More
Read MoreTexas Infant to Become Fifth Child to Receive Life-Saving Gene Therapy Treatment on U.S. Soil
DALLAS, Feb. 05, 2024 (GLOBE NEWSWIRE) — Sufyan Pashai, a 4-month-old from Dallas, will travel to Minnesota and become the fifth child to receive life-saving gene therapy treatment on U.S….Read More
Read MoreFirefly 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
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