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209 – How a Mom Launched the First Drug Approval in FA
Podcast: Play in new window | Download
In this Episode:
- You Got This, Mental Health – Feeling seen and heard. Some of the responsibilty is on you.
- Can a single person make a difference? The amazing story of the first approved drug for Friedreich’s ataxia (FA)
- Thank you notes – Reata Pharmaceuticals, and Kyle’s landlord at work.
As the story goes, a concerned mother, in an effort to do whatever she could for her son who has Friedreich’s ataxia (FA), connected a few important dots about science and the pharmaceutical industry. When she decided to make a phone call to the Friedreich’s Ataxia Research Alliance (FARA), she started a series of actions and events that eventually led to the approval of the first treatment for FA, SKYCLARYS. Listen for the details.
Links and Resources:
Incredible interview and story guys! I never had a clue Ruth is the “Lorenzo’s Oil” parent of the 21st century. Kudo’s to her!
And it warms my heart that she felt such support from FAPG in those early days.
Ruth is pretty amazing, right!?
Thank you for all YOU do to support the FA community.