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CALSCALE:GREGORIAN
METHOD:PUBLISH
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X-WR-CALDESC:Join us for a webinar where researchers Stacey Reynolds and Vi
 rginia W. Chu of Virginia Commonwealth University will speak to our commun
 ity 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 number
 s the fatigue experienced and voiced by our affected individuals. In the f
 irst of this two-part effort\, Dr Reynolds’s team will conduct interviews 
 with affected individuals\, siblings\, parents to capture how fatigue impa
 cts daily living. Dr. Chu\, in the second quantitative component\, propose
 s to remotely capture self-assessment of fatigue levels in real-time using
  a novel phone application\, and map those ratings onto activity data coll
 ected by wrist-worn watches worn by affected individuals. This mixed metho
 ds approach aims to qualify and quantify fatigue in our community and is i
 n direct response to the stories shared during the 2018 Patient Focused Dr
 ug Development meeting.
X-WR-RELCALID:ba3028d4dc628b15c72615d614e92201
X-WR-TIMEZONE:America/New_York
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:STANDARD
TZNAME:EST
DTSTART:20201101T020000
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
RDATE:20211107T020000
RDATE:20221106T020000
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TZNAME:EDT
DTSTART:20210314T020000
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TZOFFSETTO:-0400
RDATE:20220313T020000
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BEGIN:VEVENT
UID:3d356726-5fba-41cc-a2a2-5b72f8acbdc8
DTSTAMP:20260425T012343Z
DESCRIPTION:Join us for a webinar where researchers Stacey Reynolds and Vir
 ginia W. Chu of Virginia Commonwealth University will speak to our communi
 ty about the scope of their research for which they recently received an I
 dea Award from BSF. The research aims to capture in context and in numbers
  the fatigue experienced and voiced by our affected individuals. In the fi
 rst of this two-part effort\, Dr Reynolds’s team will conduct interviews w
 ith affected individuals\, siblings\, parents to capture how fatigue impac
 ts 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 colle
 cted by wrist-worn watches worn by affected individuals. This mixed method
 s approach aims to qualify and quantify fatigue in our community and is in
  direct response to the stories shared during the 2018 Patient Focused Dru
 g Development meeting.
DTSTART;TZID=America/New_York:20210618T120000
DTEND;TZID=America/New_York:20210618T130000
LOCATION:Registration details will be sent after registering through the RE
 GISTER NOW option above.
SUMMARY:Webinar:  Barth Fatigue
END:VEVENT
END:VCALENDAR