Family Stories

Danielle Senick of Norwich, Conn., reached out to Sofia Sees Hope more than three years ago when she needed answers about her deteriorating vision. Doctors diagnosed Danielle at age 6 months with [...]

Building on her son’s love of music, singing, moving, and reading, Laura Steinbusch created a multilingual children’s songbook called Lux+Louise to help youngsters learn music by braille. With [...]

By Jack McCormick I first heard about coronavirus on my way back from a weekend of skiing in mid-January. It seemed to be the only thing the radio station we were listening to was talking about. [...]

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 [...]

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 a [...]

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 lives with Leber congenital amaurosis [...]

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 [...]