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

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Wrapping 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

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Identifying 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

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Global 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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Firefly Fund Joins National Effort to Give a Voice to NPC Patients

Firefly Fund was proud to partner with the Ara Parseghian Medical Research Fund and other NPC patient-inspired foundations such as Dana’s Angels Research Trust, Hope For Marian, National Niemann-Pick Disease…Read More

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Firefly Fund is Buzzing With Activity

It is hard to believe Firefly Fund is coming up on our third anniversary. Ahead of Global Niemann-Pick Disease Type C (NPC) Awareness month in October and a number of…Read More

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Today we reaffirm the mission of the Firefly Fund

There are pivot days. Days that change your life. Some days you mourn. Some days you celebrate.  Of course, March 10th, 2016 is the day we began this journey. Two…Read More

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Austin’s Fox 7 News Highlights the Andrews Sisters on World Rare Disease Day

Fox 7 News in Austin shared the story of Belle and Abby to mark World Rare Disease Day, which coincides with the one year anniversary of the launch of the…Read More

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Warrior Sisters–An Update from Pam & Chris Andrews

Warrior Sisters. That is how I would describe my incomparably beautiful daughters, Belle and Abby. They are both brave and strong and kind and trusting and warm and gentle yet…Read More

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Belle & Abby Celebrate Dell Children’s Medical Center’s 10th Anniversary

The Andrews family was grateful to share in the celebration of the 10th anniversary of Austin’s Dell Children’s Medical Center. The whole staff at Dell Children’s have been an integral…Read More

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