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!
August is #NationalEyeExamMonth - we often hear stories of parents who spend months or years seeking a diagnosis for their child before they learn it is #LCA. Visit our website to learn more: https://t.co/0Hje0Db1qh #IRD
An inspiring story and some excellent advice from a young woman in Mexico living with LCA. Thank you Angelica for sharing your incredible story! https://t.co/Hk2QUlOWwh
Please join us Oct. 5-6 for our 1st LCA Family Conference. We are committed to connect LCA families to researchers, industry experts & other families who are on a journey to understand & live with LCA. https://t.co/PsaAw3dyEO #LCA #IRD
Today is Prime Day! @Amazon donates to Sofia Sees Hope Inc when you shop Prime Day deals at https://t.co/SezAhovKFO. #PrimeDay
August is National Eye Exam Month - and we encourage everyone to have their eyes checked annually. We hear so many stories at SSH about parents who notice their baby is not tracking with their eyes early on, and they begin a journey that leads them to many doctors before they are able to get a correct diagnosis and plan of action.
We encourage you to visit our website and learn more.
For Families - Sofia Sees Hope
sofiasees.org
Inherited retinal diseases (also called inherited retinal dystrophies, or IRDs) are a group of rare eye disorders caused by an inherited gene mutation and can result in vision loss or blindness. They include retinitis pigmentosa, Leber congenital amaurosis, cone-rod dystrophy, juvenile macular degen...A doctor’s diagnosis: Cone rod dystrophy
asharedvision.com
“Dr. Bill” Takeshita, renowned Los Angeles optometrist, was intimately familiar with the dramatic way that vision loss and blindness could change a life. He just never thought it would be his own. Read more