Firefly Chat

Firefly Fund

5.0(1개의 평가)
과학

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.

35분
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.

38분
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.

53분

3개의 에피소드

Such Fierce Advocates!

2020. 12. 15.

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.

제작진

Firefly Fund
방송 연도

2020년 - 2021년
에피소드

3
등급

전체 연령 사용가
저작권

© All rights reserved
웹사이트 보기

Firefly Chat