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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) — […]

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 […]

  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, [...]

Ledyard, CT (Oct. 25, 2017) — The Oct. 14 ‘Dinner in the Dark’ event hosted by Sofia Sees Hope raised nearly $200,000 to support its advocacy and education programs for […]

A two-day conference in Washington, D.C., earlier this month offered the opportunity for organizations such as Sofia Sees Hope to discover the latest in the rare disease community, meet the […]