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!
Join my upcoming webinar: Know Your Gene: The Importance of Genetic Te... https://t.co/MsOS3CWWaK via @GoToWebinar
Join my upcoming webinar: Know Your Gene: The Importance of Genetic Te... https://t.co/MsOS3CWWaK via @GoToWebinar
— Sofia Sees Hope (@SofiaSeesHope) May 23, 2018
Please register for Know Your Gene: The Importance of Genetic Testing in Inherited Retinal Diseases on May 24, 2018 2:00 PM EDT at: https://t.co/MsOS3CWWaK @fightblindness @GlobalGenes @RareDiseases #genetictesting
Please register for Know Your Gene: The Importance of Genetic Testing in Inherited Retinal Diseases on May 24, 2018 2:00 PM EDT at: https://t.co/MsOS3CWWaK @fightblindness @GlobalGenes @RareDiseases #genetictesting
— Sofia Sees Hope (@SofiaSeesHope) May 22, 2018
10 Days Until Our Webinar on the Importance of Genetic Testing For IRDs - https://t.co/FSPLrXYycV https://t.co/gskiyBdIuD
10 Days Until Our Webinar on the Importance of Genetic Testing For IRDs - https://t.co/FSPLrXYycV pic.twitter.com/gskiyBdIuD
— Sofia Sees Hope (@SofiaSeesHope) May 14, 2018
Treatment for #LCA #RPE65 is now available, and many patients/ families are beginning the process or have already gone through the procedure. But some are taking a wait-and-see approach. Meet Maverick and his family.
https://t.co/w8Z1vm1sjh #Luxturna
Treatment for #LCA #RPE65 is now available, and many patients/ families are beginning the process or have already gone through the procedure. But some are taking a wait-and-see approach. Meet Maverick and his family. https://t.co/w8Z1vm1sjh #Luxturna
— Sofia Sees Hope (@SofiaSeesHope) May 10, 2018
Due to some last-minute scheduling issues, today's webinar, "Know Your Gene," has been rescheduled to June 7. If you are already registered, you are automatically re-registered. We apologize for any inconvenience, and if you can't make it on that date we will post a recording afterwards on our website.
Our friends at Eighty Six Media are in Florida hanging with our friend Creed, who recently underwent treatment to reverse his vision loss from LCA RPE65. We can’t wait to see the video!
Creed's Cause