Supporting the LCA and rare retinal disease community

We see a cure for 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.

Mystic Aquarium
Simply Majestic
Mohegan Sun
Eye Care Expressions
LM Hospital
Sanofi Genzyme

Let’s Get Social!

Our quarterly newsletter is out! Read and download it here: Please sign up to receive our newsletter, & email updates: @fightblindness #LCA #IRD SofiaSeesHope photo

Big news from @Editasmed: "The LCA10 (CEP290 gene) program is on track to be the first in vivo CRISPR-based genome editing medicine with patient dosing expected in the second half of 2019.” #LCA #IRD #genetherapy #CRISPR

Happy New Year! These two little girls greeted 2019 with something they'd never had before — vision.… @spark_tx #RPE65 #LCA #IRD #Luxturna

We would be grateful if you were able to donate today - 100% of money raised by our year-end appeal will provide families access to free genetic testing and counseling. Thank you for your support. We are grateful for the community we have created here.

1 day ago

Sofia Sees Hope

Our quarterly newsletter is out! In this issue, meet Mikayla Larson, a 30-year-old mother of 3 young children living with a rare form of Leber congenital amaurosis. Our young adult columnist Jack McCormick tackles the question, "Should You Tell Others About
Your Vision Loss?" Ben Shaberman of Foundation Fighting Blindness provides insight into the elusive genes research effort, and a complete calendar of upcoming conferences and seminars!

Read and download it here:
Please sign up to receive our newsletter, and our email updates (you can also read back issues of the newsletters):
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