Join us for a webinar where researchers Stacey Reynolds and Virginia W. Chu of Virginia Commonwealth University will speak to our community about the scope of their research for which they recently received an Idea Award from BSF. The research aims to capture in context and in numbers the fatigue experienced and voiced by our affected individuals. In the first of this two-part effort, Dr Reynolds’s team will conduct interviews with affected individuals, siblings, parents to capture how fatigue impacts daily living. Dr. Chu, in the second quantitative component, proposes to remotely capture self-assessment of fatigue levels in real-time using a novel phone application, and map those ratings onto activity data collected by wrist-worn watches worn by affected individuals. This mixed methods approach aims to qualify and quantify fatigue in our community and is in direct response to the stories shared during the 2018 Patient Focused Drug Development meeting.