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

<p>In this Episode:</p> <ul> <li><em>You Got This</em>, Mental Health - Feeling seen and heard.  Some of the responsibilty is on you.</li> <li>Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA)</li> <li>Thank you notes - Reata Pharmmaceuticals, and Kyle's landlord at work.</li> </ul> <p> </p> <p>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 (<a href= "https://www.curefa.org/index.php" target="_blank" rel= "noopener">FARA</a>), she started a series of actions and events that eventuallu led to the approval of the first treatment for FA, SKYCLARYS.  Listen for the details.</p> <p>Links and Resources:</p> <ul> <li>Announcement: <a title="First treatment for FA" href= "https://www.curefa.org/news-press-releases/first-medication-to-treat-friedreich-s-ataxia-approved-on-rare-disease-day" target="_blank" rel="noopener">First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day!</a> </li> </ul>