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X-WR-CALNAME:BEBRF
X-ORIGINAL-URL:https://blepharospasm.org
X-WR-CALDESC:Events for BEBRF
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TZID:UTC
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DTSTART:20200101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20211027
DTEND;VALUE=DATE:20211117
DTSTAMP:20211027T160444Z
CREATED:20211027T155118Z
LAST-MODIFIED:20211027T160444Z
UID:2786-1635292800-1637107199@blepharospasm.org
SUMMARY:You Can Participate in Research!
DESCRIPTION:WE NEED YOUR HELP! Earlier this year several BEBRF patients participated in focus groups for a Patient-Centered Outcome (PCO) research project developing a phone app that will track the efficacy of botulinum toxin injections from injection cycle to injection cycle. The project has been created by Drs. Sarah Pirio Richardson (University of New Mexico) and Brian Berman (Virginia Commonwealth University)\, both on the BEBRF Medical Advisory Board. This project is funded by the Dystonia Coalition. They are ready to move on to the next phase of the project\, and you can help. \nThey are currently collecting data from patients with blepharospasm and now want to hear from YOU! \nThe Goal: To gather data that will be essential for developing future novel treatments for dystonia. \nHow they are doing it: By learning more about the symptoms and activities that can be troublesome for people with blepharospasm\, understanding which aspects of this condition are most relevant to you\, and identifying which aspects of this condition you would most want to see a treatment for. \nHow you can help: By filling out this survey! As they develop tools to gather this information\, feedback from patients like you is essential. \nClick here for survey
URL:https://blepharospasm.org/event/you-can-participate-in-research/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211101
DTEND;VALUE=DATE:20220201
DTSTAMP:20211101T135634Z
CREATED:20211101T135522Z
LAST-MODIFIED:20211101T135634Z
UID:2798-1635724800-1643673599@blepharospasm.org
SUMMARY:Participate in a Clinical Trial!
DESCRIPTION:The drug company ADDEX together with Dr. Buz Jinnah of Emory University (who serves on our MAB and the Medical and Scientific Advisory Council for DMRF) is launching a trial of a new class of medications known as allosteric modulators. The name of the drug they will use is dipraglurant. It is being studied for possible use with Parkinson’s disease and dystonias. \nThe study will be a small pilot trial of about 15 patients. The patients will take oral medication and then stay at Emory University for several hours of observation\, followed by a second dose. The next day\, a third dose will be given. So\, participation would require 2 days at Emory University in Atlanta. \nIf you are interested in participating in this research\, please contact Cameron Injoo for further information: cameron.injoo.yeo@emory.edu
URL:https://blepharospasm.org/event/participate-in-research/
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