Firefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News

A continuation of Firefly Fund co-founder Pam Andrews’ discussion with NPC moms, highlighting the benefits of Adrabetadex. The moms share their fears about a future without the medication, the popular…Read More

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Firefly Chat Episode 7 (Part 1): NPC Moms React to Adrabetadex News

Firefly Fund co-founder Pam Andrews has a heartfelt and candid conversation with nine other NPC moms from around the world regarding recent news of the discontinuation of the medication Adrabetadex. This episode gives a glimpse into…Read More

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Buy a Cat Lawyer T-shirt today & Join the Flight!

Rod Ponton, AKA the Cat Lawyer, has become an internet sensation, bringing much-needed laughter to people around the world. Mr. Ponton hopes to use the opportunity as a springboard to…Read More

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The Wall Street Journal Features Andrews’ NPC Journey

Amy Marcus of the The Wall Street Journal featured the Andrews’ journey with Niemann-Pick Type C (NPC) and the investigational medication referred to as Adrabetadex (VTS-270). The article also highlighted…Read More

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Austin American-Statesman Features Firefly Fund’s Work in Newborn Screening

The Austin American-Statesman featured Firefly Fund’s work on newborn screening for NPC. The online article highlighted the ScreenPlus program, that with Firefly Fund’s support, recently launched at Children’s Hospital at…Read More

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Firefly Chat Episode 6: Mallinckrodt Pharmaceuticals

Firefly Fund founders Pam and Chris Andrews chat with the Mallinckrodt team. Dr. Steve Romano, Elissa Cote, and Sheila Talafous share their journies to joining the Mallinckrodt team, how rare…Read More

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Firefly Chat Episode 5: NNPDF

Firefly Fund founders Pam and Chris Andrews celebrate NPC Awareness Month by having a conversation with National Niemann-Pick Disease Foundation, Inc., Executive Director Joslyn Crowe, MSW, MA, and NNPDF Board…Read More

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Firefly Chat Episode 4: Newborn Screening

This month’s episode of Firefly Chat focuses on Newborn Screening Awareness Month. The podcast was repurposed from a discussion at the recent World Orphan Drug Congress, featuring speakers Firefly Fund…Read More

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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

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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

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