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  Amy Reif still can’t hold back tears when she recounts first hearing that a ground-breaking genetic-therapy treatment targeting her daughter’s LCA-RPE65 gene officially received approval. [...]

This is the first in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who is a candidate for the breakthrough gene-therapy drug called LUXTURNA™, approved as [...]

Brandon Biggs was diagnosed with vision loss — and ultimately with Leber congenital amaurosis (LCA) — as a toddler. His genetic mutation is LCA-CRB1, which can cause LCA, retinitis pigmentosa [...]

By Claudia Zaghi-Biggs When I met Brandon in September 2014, I thought that I was talking to the most interesting person I had ever met. Not only was he the […]

By Atom Biggs Raising a blind son has been one of the most exciting and inspiring experiences a dad can ever have. I’d like to tell you a little about […]

Brandon Biggs is the chief financial officer with his mother Sonja in their company, he conducts accessibility research and he helps businesses make their software content more accessible to the [...]

LUXTURNA™ (voretigene neparvovec), is the first pharmacologic treatment for inherited retinal disease and the first gene therapy for a genetic disease in the US Ledyard, CT (Dec. 19, 2017) — […]

Preschooler Vittoria shrieks with delight as she bounds down the cobblestone way, toward the big statue of the angel riding a chariot. Later we see the almost-4-year-old, nicknamed Vicky, tossing [...]

Ledyard, CT (Dec. 4, 2017) — Sofia Sees Hope, a Ledyard, CT-based patient advocacy organization dedicated to transforming the lives of those affected by blindness caused by Leber congenital [...]

Tami Morehouse made research history in the Leber congenital amaurosis world, and in the nation, when at age 44 she became the oldest person in a successful LCA-RPE65 genetic therapy […]