Supporting the LCA and rare retinal disease community
We see a cure for blindness.
What is Leber Congenital Amaurosis (LCA)?
LCA is a rare inherited retinal disease characterized by severe vision loss at birth. While some children are born with little or no vision, others may have significant vision loss in the first few years of life, stable vision for a period of time, and then eventually complete vision loss as the retina deteriorates into total blindness.
What We Do
Founded in 2014, Sofia Sees Hope is a nonprofit 501(c)3 patient advocacy organization dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and rare inherited retinal disease community.
Thank You to These Organizations
for their Ongoing Commitment to Sofia Sees Hope.
Let’s Get Social!
We had first rate panels at the LCA Family Conference last Saturday and they shared their PowerPoints with us. You can find them on our website.
https://t.co/NlNUjHzqEG @fightblindness @US_FDA @editasmed #LCA #IRD
VIDEO: 9-yr-old Creed Pettit was one of the youngest in the US to receive treatment for his LCA-related vision loss in March 2018 with LUXTURNA. https://t.co/ta97frfWcd @spark_tx #LCA #Luxturna #RPE65
Blind Abilities—a podcast highlighting resources for those living with blindness or vision loss—met with Fernanda Silva. When she was told she couldn’t continue studying graphic design, she was determined to overcome. Hear her inspiring life story.
We are well represented at National Organization for Rare Disorders, Inc. (NORD) Rare Diseases and Orphan Products Breakthrough Summit in Washington today and tomorrow. Pictures are SSH cofounder Charles Priebe and Director of Development Mardy Pryor.