News

Click here to download the January 2018 issue of our ‘Seeing Hope’ newsletter.  

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) — […]

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 [...]

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 […]

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 [...]

Sofia Sees Hope published Seeing Hope, its first newsletter in October, a keystone of its advocacy and outreach program for families living with Leber congenital amaurosis. “The goal of [...]

Sofia Sees Hope is the recipient of paperback and Kindle proceeds through October from “The Bug in Our Brain,” a new self-help book by Robert Christiansen, a friend and longtime […]

The Bug in Our Brain by Robert Christiansen is a new and unique perspective into self-help and personal development.  While many books and programs teach about success, Christiansen found that [...]

To help expand our resources to the Leber congenital amaurosis community, Sofia Sees Hope has joined the RARE Foundation Alliance of Global Genes. The RARE Foundation Alliance is a coalition of [...]

Last week Sofia Sees Hope signed on to a letter to Congress urging it to keep in place the Orphan Drug Tax Credit, which allows drug manufacturers to claim a […]