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!
Please join us for A Rare Opportunity to raise awareness of inherited retinal disease, treatments, and living life to the fullest. https://t.co/7Uls9x8ikg #LCA #IRD #RP #LUXTURNA
Moms like Ashlyn are why we do what we do. Making connections, alleviating feelings of isolation, bringing together those in the rare disease community. Thank you Ashlyn for sharing your story. https://t.co/mYW1PkBzt9 #LCA #CEP290 #LCA10 #IRD
This is great news for the inherited retinal disease community, while not impacting Leber congenital amaurosis patients directly. https://t.co/IinpX4FgeH @MeiraGTx @JanssenGlobal #IRD #GeneTherapy #LCA
Thank you to all our supporters, donors, sponsors, and friends. Because of you we are able to help 3 important research projects continue to move forward, and help families in our community access genetic testing.
https://t.co/d8Yz6Pbh58 https://t.co/5mho0q5xPs
Moms like Ashlyn are why we do what we do. Making connections, alleviating feelings of isolation, bringing together those in the rare disease community. Thank you Ashlyn for sharing your story.
Living with LCA: ‘Know It’s Not Something You’re Going to Conquer in One Day’ - Sofia Sees Hope
sofiasees.org
The best of both worlds – that’s how Ashlyn Lincoln describes life with her two sons: 4-year-old Gunner, who was born without vision, and 7-year-old Ace, who is sighted. “Both Ace and Gunner teach us many life lessons, regardless of who is sighted and who is blind,” says their 29-year-old mo...Our friend Laura Steinbusch is working on a neat project for visually impaired and sighted babies!
Learn more about Laura and her son Enzo on our website: sofiasees.org/enzos-story/.Wij zijn druk bezig met een superleuk project! Een liedjesboek in verschillende talen in braille! Speciaal voor blinde kindjes, maar ook vooral voor alle kindjes! Een mooie samenwerking met Laura Steinbusch.
Snel meer...!