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 MoreFDA approves Aqneursa for NPC
September 24, 2024 FDA approves Aqneursa for NPC Yesterday, the FDA approved AQNEURSA, a second therapy for NPC patients. This approval highlights the power of collaboration and partnership. For the…Read More
Read MoreFDA approves Miplyffa for NPC
September 25, 2024 FDA approves Miplyffa for NPC Today is a monumental day for the NPC Community and the first thing Chris and I wanted to do was share it…Read More
Read MoreFirefly Fund Announces $5 Million Gift
February 27, 2024 Firefly Fund Announces $5 Million Gift to Create Center for Rare Disease at UT Austin Dell Medical School Austin, Texas – To mark World Rare Disease Day…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 MoreFirefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News
A continuation of Firefly Fund co-founder Pam Andrews’ discussion with NPC moms, highlighting the benefits of Adrabetadex. The moms share their fears about a future without the medication, the popular…Read More
Read MoreFirefly Chat Episode 7 (Part 1): NPC Moms React to Adrabetadex News
Firefly Fund co-founder Pam Andrews has a heartfelt and candid conversation with nine other NPC moms from around the world regarding recent news of the discontinuation of the medication Adrabetadex. This episode gives a glimpse into…Read More
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