We support research & education to cure rare neurodegenerative genetic diseases that affect children and have no cure.
Firefly Chat
Claim This Podcastby Firefly Fund
5.0(1 reviews)
3 episodes
Updated Daily
Accepts GuestsHas Sponsors
Podcast Overview
We support research & education to cure rare neurodegenerative genetic diseases that affect children and have no cure.
Language
🇺🇲
Publishing Since
12/2/2020
1 verified contact email on file for Firefly Chat
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Recent Episodes
March 2, 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.
February 25, 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.
December 2, 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.
3 total episodes available
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Frequently asked questions
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- What is Firefly Chat?
- How often does this podcast release new episodes?
This podcast updates daily.
- Where can I listen to this podcast?
This podcast is available on 4 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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