Firefly Chat

Firefly Fund

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We support research & education to cure rare neurodegenerative genetic diseases that affect children and have no cure.

2021-03-02

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 topic of risk vs. benefit to administer the medication, as well as thoughts about adding additional therapies to treat NPC children and give them the best chance to live healthy lives.
2021-02-25

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 the difficult circumstances NPC families are facing, as well as their personal concerns and fears about their children's futures.
2020-12-02

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 disease has impacted them, and what is coming up with the study of adrabetadex.

3 avsnitt

We support research & education to cure rare neurodegenerative genetic diseases that affect children and have no cure.

Skapad av

Firefly Fund
Aktiva år

2020 - 2021
Avsnitt

3
Åldersgräns

Barnvänligt
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Firefly Chat