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!
Next week we launch our monthly free web series called "Let's Chat About ..." for those living with LCA and IRDs. This series is made possible with the support of @spark_tx, @JanssenUS @MeiraGTx, @DominionEnergy @ProQR and @AGTC_. Learn more: https://t.co/2Np9a58Z3k https://t.co/wnJ4S5nx3u
We are THRILLED to announce our 2021 initiative, "Let's Chat About ..." a webinar series designed to educate and connect the Leber congenital amaurosis and inherited retinal disease communities. https://t.co/zxaVNenXE7 @fightblindness
Last call for registration! Middle School Book Club starts Monday! And a huge thank you to our sponsors, who helped make this happen: @spark_tx @JanssenUS @MeiraGTx, @ProQR Dominion Energy, and @AGTC_ .
https://t.co/jk9fhoMY8l
2020 was scary, unprecedented, challenging...Thru it all, we stayed mission-focused & were able to continue our support of research into treatments for #LCA and ensure families had access to #GeneticTesting. https://t.co/ZMrYRdzZTB @fightblindness
Just reminiscing about how fun Dinner in the Dark was in 2019 ... good times, good times. Remember that guy who brought his own chair, and wore his blindfold wrong? Weird. He didn't bid on any live auction items either.
Next week is the launch of our new monthly free web series called "Let's Chat About ..." We've developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and regulatory to attend any of the sessions.![]()
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This series is made possible with the support of Spark Therapeutics, Janssen Pharmaceutical Companies of Johnson & Johnson, Meira GTx, Dominion Energy, ProQR, and AGTC. We thank them for their continued partnerships, as we look ahead to a common goal of advancing treatments for rare retinal disease.![]()
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Learn more and register: www.sshwebseries.com/