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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 [...]

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) — […]

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 […]

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 […]

Our fourth annual Dinner in the Dark event broke all our past records: most attendees, most money raised, and most fun ever. More than 370 guests attended Dinner in the […]

At three o’clock Thursday afternoon, Beth Chiarella and I had a very public moment of tears and hugs at Baltimore–Washington International Airport as we received news that after a day […]

Sofia Sees Hope Co-Founder Laura Manfre will help provide the LCA community’s perspective to a Food & Drug Administration panel Thursday about a proposed genetic therapy for Leber congenital [...]