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!
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
We are proud to join with @fightblindness, @curechm, @ARVOinfo, @UsherCoalition, @BlindedVeterans, and National Alliance for Eye and Vision Research to support the proposed 'Eye Bonds' federal legislation.
https://t.co/jTwQjjudpw
At the age of 19, Nicole Caccavo Kear’s biggest concern was choosing a major in college—until she got a life-
changing diagnosis of retinitis pigmentosa. She had only a decade or so before she was blind.
Kear decided to make the most of the vision she had left. She joins circus school, tears through boyfriends,
travels the world, and through all these hi-jinks, she
keeps her vision loss a secret.
Told with humor and irreverence, “Now I See You” is an uplifting story about refusing to cower at life’s curveballs, about the power of love to triumph over fear. But, at its core, it’s a story about acceptance: facing the truths that just won’t go away, and facing yourself, broken parts and all.
We are thrilled to bring Nicole to southeastern CT on March 30 for "A Rare Opportunity," a fund- and awareness-raiser for Sofia Sees Hope.
Tickets and more information: 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...We Don't Want You To Miss This Rare Opportunity! - mailchi.mp/4b42bf92b867/we-dont-want-you-to-miss-this-rare-opportunity