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 is LSA?

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.

 
Editas
Mystic Aquarium
Spark
Simply Majestic
Mohegan Sun
Eye Care Expressions
LM Hospital
Dominion
MeiraGTx
Sanofi Genzyme
 

Let’s Get Social!


Being diagnosed with an #IRD can sometimes take years & be frustrating and scary. Sharing patient stories helps end that isolation and frustration. Sarah let us follow her son Creed's #LUXTURNA treatment. https://t.co/xNdK2RWVeO #ShareYourStory @rarediseaseday @spark_tx

In today's lead up to #RareDiseaseDay 2/29, we share Tami Morehouse’s story. At 44 she became the oldest person in a successful #LCA #RPE65 genetic therapy trial (2009), and the first patient to receive the retinal therapy in both eyes. https://t.co/toLr9z0uaS #ShareYourStory

When Laura Steinbusch realized her toddler Enzo, who has LCA10, could easily learn new words in French or English through songs, she began working on a multilingual children’s songbook for blind children. She published it last year. https://t.co/gotCbR8DSr #ShareYourStory

Dami's story is an example of why we advocate so strongly for genetic testing. Knowing your diagnosis and your gene can present options you otherwise wouldn't know about. https://t.co/g6U6TEWwFB #ShareYourStory @rarediseaseday @RareDiseases @fightblindness