LCA Families Finding Strength with Each Other
Heather Le’s anxiety accompanying her daughter’s diagnosis of Leber congenital amaurosis melted into relief when she connected with a mom whose daughter was also born with LCA. And this mom […]
LCA Family Conference 2019
Join Sofia Sees Hope for its 2nd LCA Family Conference in Philadelphia. In multiple sessions, hear the latest in research, treatments, education, and advocacy in the Leber congenital amaurosis [...]
‘Seeing Hope’: LCA Family Newsletter
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 [...]
Attention LCA Families: Sign up to receive the LCA Family Newsletter!
Sofia Sees Hope, a nonprofit focused on families living with Leber congenital amaurousis (LCA), will launch a quarterly newsletter in the fall of 2017. SSH funds research for diagnosis, [...]
A TREATMENT JOURNEY: Jumping Hurdles, Taking Risks
“If someone told me that having access to perfect vision tomorrow meant not having impaired vision for my entire life, I would not change the past. While my visual impairment […]
HOPE IN ACTION: A Conversation with Laura Manfre
How did Hope in Focus begin? In 2013, after our daughter, Sofia, was diagnosed with Leber congenital amaurosis (LCA) IQCB1/NPHP5, the Foundation for Retinal Research (FRR) asked if my husband [...]
We’re hiring: Hope in Focus Staff Writer
Apply today to join our team! If the job description below sounds like a fit for you, please apply via Indeed using the button below. Part-time writer / editor position […]
Let’s Chat About … RARE-X with Karmen Trzupek
Through global data sharing and analysis, the nonprofit RARE-X (the research arm of Global Genes) is working to accelerate treatments for rare diseases, including Leber congenital amaurosis (LCA) [...]
Hope in Focus to Host Screening of A Shot in the Dark and Talkback with Blind Athlete Anthony Ferraro
Hope in Focus will host a fundraising event called A Rare Opportunity on June 4, 2023, at United Theatre in Westerly. Included will be a viewing of the award-winning film […]
Hope in Focus Rare Disease Day Statement to Connecticut’s Legislature
Representatives from Hope in Focus joined Connecticut’s Rare Disease Day celebration at the Capitol in Hartford on March 23, 2023. A New England snowstorm postponed the event usually [...]