Meet Dr. Steve Rose
Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases.
Archive for July, 2012
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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Most everyone with an inherited retinal degenerative condition eventually asks the questions, “How do I find out what gene is causing my disease, and how can that information help me today?”
A Woman With Stargardt Disease Pursues the Miss USA Title
Video Included
What a difference a year makes. Last year, competing in the teen category of the Miss Florida USA pageant, Connor Boss stumbled on a set of stairs while making her way to the stage. Only family and friends knew the reason why. This year, the 18-year-old will compete in the same pageant as an adult. And thanks to ABC’s Good Morning America, she’ll do so as someone known to have Stargardt disease.
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