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 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
Read MoreAndrews 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 MoreOpportunity 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 MoreFirefly 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 MoreFirefly 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 MoreMeeting 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 MoreWrapping Up Year of Progress: Advancing Newborn Screening for NPC
Firefly Fund’s Newborn Screening Working Group completed its final meeting of the year in December — the Annual Stakeholder Meeting. While in Washington, D.C., the Working Group reviewed the year’s…Read More
Read MoreIdentifying Rare Diseases In Newborns: Broader Screening For Better Outcomes
Pediatric genetic expert Dr. Melissa Wasserstein has been awarded $3.2 million from the National Institutes of Health (NIH) to conduct the most expansive consented pilot newborn screening study in the…Read More
Read MoreGlobal Genes’ RARE Daily Features Firefly Fund Co-Founder & Executive Director Pam Crowley Andrews
International rare disease organization Global Genes recently interviewed Firefly Fund Co-founder and Executive Director Pam Crowley Andrews for a profile in Global Genes’ online publication, RARE Daily. The piece features…Read More
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