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 […]
By Jack McCormick Parents want nothing but the best for their children. This is why I am so often asked questions like, “I have a 6-year-old son who has a […]
By Allison Galloway Somehow I made it through 37 years of life without ever meeting a blind person. Then my 3-year-old son was diagnosed with a rare genetic disease called […]
Annie Cohane takes singing lessons and piano lessons, she runs track, she’s working on swimming, and she’s a second-grader at an elementary school in Norwell, Mass. She’s 8 years […]
Your voice counts! Lawmakers on the state level need to hear from people living with Leber congenital amaurosis (LCA) and other rare diseases to help secure funding for research, patients’ needs, [...]