Displaying 11–20 of 42 resources results
Jun 17, 2019 Beacon Stories
Jack Hogan was diagnosed with retinitis pigmentosa at only two-and-a-half years old. But with the help of connections made with the Foundation, Jack became the first-ever recipient of the FDA-approved gene therapy known as LUXTURNA.
Jun 3, 2019 Beacon Stories
Gertrude Weiss was one of the early Foundation Fighting Blindness investors and advocates. Diagnosed with retinitis pigmentosa, Gertrude continues to live her life to the fullest. As a longtime friend, the Foundation honored Gertrude on her 100th birthday recently.
May 20, 2019 Beacon Stories
Jenny Schisler has retinitis pigmentosa. Jenny wants to spread awareness of what having a visual impairment really means to her and others affected by retinal degenerative diseases.
Apr 26, 2019 Beacon Stories
Paul Castle was diagnosed with X-linked retinitis pigmentosa at the age of 16, but continued to follow his passion for art. Now Paul is a full-time artist and donates 5 percent of his art sales to the Foundation.
Oct 16, 2018 Beacon Stories
Kai Wang was 18 months old when he was diagnosed with the condition. His parents never imagined the extraordinary journey they would take with their son when they learned he had a condition that would render him blind.
Jul 27, 2018 Beacon Stories
A story about living with retinitis pigmentosa.
Dec 17, 2017 Beacon Stories
“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.“
Oct 9, 2017 Beacon Stories
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.
Sep 20, 2017 Beacon Stories
When you’re the catcher, the ball always comes to you. Heather Presnar wouldn’t have had it any other way.
Aug 7, 2017 Beacon Stories
Christian Guardino has been singing for as long as he can remember; it’s the seeing that is something new.