Drew’s Beacon for Blindness and Foundation Fighting Blindness are hosting a webinar Wednesday, July 15, at 4:30 p.m. EST on current research involving LCA-CRX, an extremely rare form of Leber [...]
Families living with Leber congenital amaurosis (LCA) came together virtually, sharing their hopes and triumphs, their challenges and frustrations as part of the three-day Virtual VISIONS 2020 [...]
Even the Covid-19 cloud has a silver lining, and living proof is Andrew Picinich, a 4-year-old preschooler with LCA-CRX, an exceedingly rare form of Leber congenital amaurosis (LCA) caused by [...]
Blink and you just might miss toddler Jordynn rocket past you. A force to be reckoned with when it comes to music and movement, Jordynn is 4 years old and […]
Ben Shaberman – Senior Director of Scientific Outreach & Community Engagement at Foundation Fighting Blindness – combines his skills in science and storytelling to create Retina Boy, a sci-fi [...]
Orly Shamir made Canadian medical history when she became the first person in the country to receive a bionic eye. In a clinical trial six years ago, Dr. Robert […]
A recipe for addiction recovery transformed Orly Shamir’s life, and now it’s about to change her future. Orly, who’s name in Hebrew means “My Light,” lives with LCA4, a form […]
The end of February signals the time to focus awareness on rare conditions by celebrating Rare Disease Day, a global event addressing the thousands of rare diseases that affect […]
By Damiana Harper I was born in 1976 in Spokane, Washington. By the time I was born, my parents’ relationship was basically over, so I was raised by a single […]
