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!
The latest in our "Living with #LCA" series: Mikayla Larson. “There are a lot of parents that are terrified for their kids to live this life. And while it’s not ideal, it doesn’t mean that they aren’t capable of living a fulfilled life like they should.” https://t.co/0WjmjmST5M
This is HUGE news for the #LCA community: @EditasMed Announces @US_FDA Acceptance of IND Application for EDIT-101, set to be the first in vivo #CRISPR medicine administered to people anywhere in the world, https://t.co/CS6wDQrwPx
Looking to get into that holiday spirit? Sofia Sees Hope has reserved a skybox for this Sunday's Pentatonix Christmas Tour! Don't be a Scrooge! Come to the show!
https://t.co/jw9s4kJ0QZ
The latest in our "Living with LCA" series: Mikayla Larson.
“I feel that there are a lot of parents out there that are terrified for their kids to live this life. And while it’s not ideal, it doesn’t mean that they aren’t capable of living a fulfilled life and love it like they should.”
Living with LCA: ‘It does no good to have pity’ - Sofia Sees Hope
sofiasees.org
Mikayla Larson, a 30-year-old mother living with a rare inherited retinal disease (IRD) called Leber congenital amaurosis (LCA) wants to reassure children living with the same disease that they’re going to be OK. “I feel that there are a lot of parents out there that are terrified for their kids...So proud to have Dr. Jean Bennett as one of our advisers.
Smithsonian Ingenuity Award Winners: Jean Bennett and Albert Maguire
The life sciences award honors the scientists who used gene therapy to cure a form of heritable blindness