Two Disabled Dudes - Living with Urgency

209 - How A Mom Launched The First Drug Approval in FA

03.13.2023 - By Kyle Bryant, Sean BaumstarkPlay

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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 Pharmmaceuticals, and Kyle's landlord at work.   As the story goes, in an effort to do whatever she could for her son who lives with Friedreich's ataxia (FA), a concerned mother connected a few important dots about science and the pharmaceutical industry.  When she decided to make a phone call to the Friedreich's Ataxia Resxearch 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: Announcement: First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day! 

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