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!
What's it like to find out you're going to be blind? What's it like to gain vision you didn't have before from a break-through genetic treatment? Join us 3/30 for dinner & a frank discussion w/ an incredible group of speakers. https://t.co/3OvPovl93P
At 19, Nicole Kear’s biggest concern was choosing a major—until she got a life-changing diagnosis of #retinitispigmentosa. Her memoir, “Now I See You” is an uplifting story of acceptance. We are thrilled to host Nicole 3/30 for "A Rare Opportunity.” Tix: https://t.co/3OvPovl93P
As part of our 3/30 event "A Rare Opportunity,” we have incredible champagnes for an exclusive tasting, including Rare Genisis, Piper-Heidsieck, Dom Perignon & Cristal Champagnes! Your taste buds will never be the same. Tickets: https://t.co/nmYccMNmiu https://t.co/EEJPj5MgYi
What's it like to find out you're going to be blind?
What's it like to gain vision you didn't have before from a break-through genetic treatment?
Join us on March 30 at Lake of Isles for dinner and a frank discussion with an incredible group of speakers about vision lost, vision gained and rare disease. Oh, and if you're up for it, find out what it's like to try some rare champagnes! Limited seating for the event, and a very limited opportunity for the Rare Champagne Tasting.
www.eventbrite.com/e/a-rare-opportunity-tickets-55910771623
eventbrite.com
Please join Sofia Sees Hope for A Rare Opportunity An evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with rare disease. Featuring Nicole Kear, bestselling author of the memoir “Now I See You,” about her d...In 2017, then 16-year-old Long Island resident Christian Guardino stepped onto the America’s Got Talent audition stage, and blew away the judges with his rendition of the Jackson 5’s “Who's Lovin' You.”
Christian had undergone experimental eye surgery five years ago as part of a clinical trial for a revolutionary genetic treatment for Leber congenital amaurosis with the RPE65 genetic mutation. Before surgery, Christian had difficulty seeing even in very bright light, having slowly lost vision since toddlerhood.
Join us Saturday, March 30 to meet Christian and others as they relate their personal journeys of vision lost and vision regained.
www.eventbrite.com/e/a-rare-opportunity-tickets-55910771623
eventbrite.com
Please join Sofia Sees Hope for A Rare Opportunity An evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with rare disease. Featuring Nicole Kear, bestselling author of the memoir “Now I See You,” about her d...