Shine A Light On Usher Syndrome by The Usher Syndrome Society
The Usher Syndrome Society is taking portraits of people living with Usher syndrome to give a face and voice to this rare disease through photojournalism and storytelling with the hope of finding a cure someday. The portraits are displayed in a traveling global exhibit called Shine A Light on Usher Syndrome. If you would like your portrait taken at the Usher Syndrome Coalition's USH Connections Conference July 13, 2019 in Philadelphia, please fill out the form below. After submitting we will get back to you with details.
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Email *
Full Name and Address (include state and country) *
What is your current age ?
What type of Usher syndrome do you have?
What age were you diagnosed with Usher syndrome?
Preferred Time Slot for Photo July 13 at Conference - confirmation emailed and at Registration
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Tell us your story: To be displayed on your portrait for exhibit. Some useful prompts: how did you feel when you were diagnosed? What are you currently doing in your everyday life? How has this diagnosis impacted you? Any message or thoughts you want to convey?
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