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Since its launch in March 2018, breakthrough gene therapy LUXTURNA®™ continues to be successful in helping improve vision in people with inherited retinal disease due to mutations in both copies [...]

Forty clinical trials and a lot of pre-clinical research into LCA treatments show promising pathways to discovering the next LUXTURNA®, according to Shannon Boye, PhD, the opening speaker for the [...]

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 [...]

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 a [...]

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 [...]

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 [...]

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 [...]

  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 [...]