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
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 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
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
Opportunity for NPC Families to Volunteer for NBS Initiative: Call for Participation from the NPC Newborn Screening Working Group

The NPC community is engaged in a multi-stakeholder effort to add NPC to newborn screening lists across the country. Since adding NPC to these lists would mean that all newborns would…Read More

Read More
Firefly Fund Postpones Annual Newborn Screening Clinical Roundtable Amid COVID-19 Concerns

Following the advice of our nation’s public health experts and recognizing the rapidly evolving situation that we all find ourselves in both at work and at home, we have decided…Read More

Read More
Firefly Fund Releases Inaugural Report to Donors

We are excited to present our donors with this inaugural report and hope you are as proud as we are of the progress we’ve made over the last three years….Read More

Read More
Meeting the Newborn Screening Requirements

The NPC community is engaged in a multi-stakeholder effort to add NPC to newborn screening lists across the country. Since adding any new condition to these lists would mean that any newborn…Read More

Read More