Buy a Cat Lawyer T-shirt today & Join the Flight!
Rod Ponton, AKA the Cat Lawyer, has become an internet sensation, bringing much-needed laughter to people around the world. Mr. Ponton hopes to use the opportunity as a springboard to…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 Chat Episode 6: Mallinckrodt Pharmaceuticals
Firefly Fund founders Pam and Chris Andrews chat with the Mallinckrodt team. Dr. Steve Romano, Elissa Cote, and Sheila Talafous share their journies to joining the Mallinckrodt team, how rare…Read More
Read MoreFirefly Chat Episode 5: NNPDF
Firefly Fund founders Pam and Chris Andrews celebrate NPC Awareness Month by having a conversation with National Niemann-Pick Disease Foundation, Inc., Executive Director Joslyn Crowe, MSW, MA, and NNPDF Board…Read More
Read MoreFirefly Chat Episode 4: Newborn Screening
This month’s episode of Firefly Chat focuses on Newborn Screening Awareness Month. The podcast was repurposed from a discussion at the recent World Orphan Drug Congress, featuring speakers Firefly Fund…Read More
Read MoreFirefly Chat Episode 3 (Part 2): Orphazyme
Tune in for the second installation of Firefly Fund Co-Founders Pam & Chris Andrews’ conversation with Thomas Kirkegaard Jensen Ph.D., Co-Founder and Chief Scientific Officer and Kim Stratton, CEO of Orphazyme, a…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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