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 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 MoreFirefly 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 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 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 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
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