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!
Wednesday marked a milestone after Creed’s surgery, reaching what doctors call the 30-day peak, meaning 30 days after surgery on Creed’s right eye, his vision will have improved as much as it is going to from the treatment. https://t.co/LpORwgIQJ4 #Luxturna https://t.co/1hpKK0GCpd
Wednesday marked a milestone after Creed’s surgery, reaching what doctors call the 30-day peak, meaning 30 days after surgery on Creed’s right eye, his vision will have improved as much as it is going to from the treatment. https://t.co/LpORwgIQJ4 #Luxturna pic.twitter.com/1hpKK0GCpd
— Sofia Sees Hope (@SofiaSeesHope) April 20, 2018
New Patient Services Program Helps People Navigate Their Road To A Cure. https://t.co/9a0vxGvMvk #LCA #IRD @spark_tx @fightblindness #RPE65 #KnowYourGene #GetTestedGetConnected
New Patient Services Program Helps People Navigate Their Road To A Cure. https://t.co/9a0vxGvMvk #LCA #IRD @spark_tx @fightblindness #RPE65 #KnowYourGene #GetTestedGetConnected
— Sofia Sees Hope (@SofiaSeesHope) April 13, 2018
The @RareDiseases invites all advocates to attend and participate in the Rare Action Network Advocacy Workshop on April 23 in Hartford, Connecticut 8am-3pm. https://t.co/Hg3Rca3cKa #IRD #RareDisease
The @RareDiseases invites all advocates to attend and participate in the Rare Action Network Advocacy Workshop on April 23 in Hartford, Connecticut 8am-3pm. https://t.co/Hg3Rca3cKa #IRD #RareDisease
— Sofia Sees Hope (@SofiaSeesHope) April 12, 2018
From @AGTC_ : “There are currently no @US_FDA approved treatments for #XLRS, a leading cause of macular degeneration in young men.” Read about the clinical trial here: https://t.co/QtduOCTRrt
From @AGTC_ : “There are currently no @US_FDA approved treatments for #XLRS, a leading cause of macular degeneration in young men.” Read about the clinical trial here: https://t.co/QtduOCTRrt
— Sofia Sees Hope (@SofiaSeesHope) April 12, 2018
"Wednesday marked a milestone after Creed’s surgery, reaching what doctors call the 30-day peak, meaning 30 days after surgery on Creed’s right eye, his vision will have improved as much as it is going to from the treatment."
Life After LUXTURNA: 'Now He Can See' - Sofia Sees Hope
sofiasees.org
This is the sixth in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment last month with the breakthrough gene-therapy drug called LUXTURNA™, approved as the first gene therapy for LCA-RPE65 and as the first-ever genetic therapy in the United...Read more about this Phase 1/2 clinical trial here: markets.businessinsider.com/news/stocks/agtc-doses-first-patient-in-phase-1-2-clinical-study-of-g...