Archives

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 […]

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 [...]

Doctors diagnosed Jack McCormick in high school with Leber congenital amaurosis due to mutations in the RPE65 gene. With a mix of feelings about his diagnosis, it was when he […]

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 [...]