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 […]
Rare disease patients, caregivers, advocates, researchers, doctors, healthcare providers and lawmakers gathered at Connecticut’s capitol in Hartford on Friday, Feb. 28, to celebrate Rare Disease [...]
WE HOPE TO RESCHEDULE IN THE FALL. Sofia Sees Hope presents “A Rare Opportunity: Kody Keplinger,” New York Times bestselling author who lives with Leber congenital amaurosis. Kody [...]
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 […]
Sofia Sees Hope donated more than $100,000 at the end of 2019 to support research into treatments for inherited retinal diseases (IRDs), including Leber congenital amaurosis (LCA), and to provide [...]
When our daughter Sofia was 2, we knew something was wrong with her vision. By the time she was 5, doctors told us she perhaps had Leber congenital amaurosis, […]
Achromatopsia: Achromatopsia is a non-progressive and hereditary visual disorder characterized by the absence of color vision, decreased vision, light sensitivity and nystagmus (repetitive and [...]
Theodor Karl Gustav von Leber would be proud. So would Adolphe Franceschetti and Carl-Henry Alström. Their research from the 19th and 20th centuries laid the foundation for groundbreaking gene [...]