Firefly 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 More
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

Read More
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

Read More
Firefly Chat Episode 3 (Part 1): Orphazyme

Firefly Fund Co-Founders Pam & Chris Andrews enjoyed their recent Firefly Chat with Thomas Kirkegaard Jensen Ph.D., Co-Founder and Chief Scientific Officer of Orphazyme and Kim Stratton, CEO of Orphazyme. We know you will…Read More

Read More
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

Read More
Firefly Chat Episode 2: John Crowley, Chairman & CEO of Amicus Therapeutics

Join Firefly Fund founders Pam and Chris Andrews as they speak about the future of rare disease treatment with John Crowley, Chairman and CEO of Amicus Therapeutics — a global,…Read More

Read More
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

Read More
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

Read More
Firefly Chat Episode 1: Welcome to Firefly Chat

Join Firefly Fund founders Pam and Chris Andrews as they share about their own personal rare disease journey that led them to the creation of Firefly Fund, as well as…Read More

Read More
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

Read More