Firefly Chat

Firefly Fund

5,0 (1)
Sciences

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

02/03/2021

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.

35 min
25/02/2021

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.

38 min
02/12/2020

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.

53 min

3 épisodes

Such Fierce Advocates!

15/12/2020

Maddoxpup

Chris and Pam are so inspirational and so intelligent and such amazing advocates for their beautiful girls! This is a great podcast and a great means for advancing toward a cure.

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

Création

Firefly Fund
Années d’activité

2020 - 2021
Épisodes

3
Classification

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Firefly Chat