Posts Tagged ‘visions’
Energized and Inspired by the Usher Syndrome Family Conference
Last weekend, I had the privilege of presenting at the third annual Usher Syndrome Family Conference in St. Louis. And while updating the attendees on the latest research was fulfilling, listening to the parents’ panel talk about how Usher syndrome has affected their families was quite moving.
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Video Included:
Now that VISIONS 2012 is over, we’re sharing with the world what attendees witnessed at the conference’s awards dinner Saturday night – an unveiling of FFB’s new logo:
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Yesterday, my last full day at VISIONS 2012, started off in what may seem an odd way, in that I prevented the hotel maid service from doing its job. I did so by hanging the “Do Not Disturb” tag outside my door, a trick I learned a couple years ago, not long after I began venturing out on trips like this on my own.
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When the VISIONS 2012 conference began yesterday, the Foundation’s Science Department’s intensive work had already begun. On Wednesday afternoon, we put 15 members of our Scientific Advisory Board (SAB) in a meeting room at the hotel under lock and key. For the next 24 hours, we gave them only bread and water, forbidding access to friends and loved ones, and, perhaps most Draconian, we cut off their wi-fi access.
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