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Displaying 21–30 of 46 resources results
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“I try not to get my hopes up too much, but I never lose hope; I’m determined. I just want to see my son’s face, see him get married, & see my grandchildren. I encourage everyone with a retinal disease to get a genetic test & to never ever give up hope.“
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Joe Caruso, founder of FOCUS Wine Foundation, knows life both with and without the ability to see. His first memory is sitting in the waiting room with his mother at the Scheie Eye Institute in Philadelphia.
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Heather Presnar’s Story: Living with Stargardt Disease
When you’re the catcher, the ball always comes to you. Heather Presnar wouldn’t have had it any other way.
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Sight and Song: The Christian Guardino Story
Christian Guardino has been singing for as long as he can remember; it’s the seeing that is something new.
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Artist with Usher Syndrome Excited to Register on My Retina Tracker to Drive Retinal Research
Artist Dana Simon describes her experience with My Retina Tracker, a free and secure online registry for people with inherited retinal diseases.
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Traveling, Whether It Is Dark or Light
Moira’s Story
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An interview with Louis Posen, record label founder and retinitis pigmentosa patient.
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People with retinal disease describe their experiences “not looking blind.”
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Changing Someone’s Life: A New Video Emphasizes the Need to Support FFB’s Mission
Allison Corona is one of 40 people with Leber congenital amaurosis who’ve benefitted from a gene therapy clinical trial.
