Blink and you just might miss toddler Jordynn Goodwine rocket past you. A force to be reckoned with when it comes to music and movement, Jordynn is 4 years old and lives with Leber congenital [...]
Welcome to the Sofia Sees Hope Social Distancing Scavenger Hunt! We are glad to meet you. If you are on this page it means you are interested in joining in on our scavenger hunt, an idea [...]
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 Devenyi and his surgical [...]
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 of Leber congenital [...]
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 one in [...]
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 mom. It was clear from a very young [...]
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, and the prognosis was grim: [...]
Clinical trials are never done in a vacuum, or in a medieval basement where Dr. Frederick Frankenstein (pronounced Fronkensteen), his pretty lab assistant, Inga, and faithful houseboy, Igor, [...]
