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X-WR-CALNAME:Patient Worthy
X-ORIGINAL-URL:https://patientworthy.com
X-WR-CALDESC:Events for Patient Worthy
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TZID:America/New_York
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TZOFFSETFROM:-0500
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TZNAME:EDT
DTSTART:20180311T070000
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DTSTART:20181104T060000
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DTSTART;VALUE=DATE:20180507
DTEND;VALUE=DATE:20180508
DTSTAMP:20260726T182147
CREATED:20180426T210429Z
LAST-MODIFIED:20180426T210429Z
UID:89210-1525651200-1525737599@patientworthy.com
SUMMARY:The Cystinosis Research Network's 57 Miles for Cystinosis
DESCRIPTION:On Cystinosis Awareness Day\, Clinton Moore of Delaware\, who is also president of the Cystinosis Research Network\, will attempt to walk 57 miles in a single day. This event will serve as a method to raise both research funds and awareness about this difficult rare disease. \nClinton’s greatest inspiration is his son Chandler\, who has the disease. He must take eye drops and medication several times a day to manage his cystinosis. Unfortunately\, these medications come with unpleasant side effects that make life very challenging for him. Ultimately\, Chandler needs a cure. \nIn addition\, Jessica\, who was first diagnosed with cystinosis in 1984\, will attempt to complete a day-long hike that will require her to climb more 5700 feet in elevation. \nThese courageous participants are committed to fundraising and bringing awareness to cystinosis. \nTo donate and support this event\, click here.
URL:https://patientworthy.com/event/cystinosis-research-networks-57-miles-for-cystinosis/
CATEGORIES:Cystinosis,Rare Disease
ORGANIZER;CN="Cystinosis%20Research%20Network":MAILTO:info@cystinosis.org
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