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!
"It's the same conversation everywhere I go," Hawkins said. "They say, 'I sat in a cell for 20 years, but when I touched my first dot of Braille, it healed me.’ " https://t.co/xXcMm4Om3R #Braille #rehabilitation #blindness
Thanks to the response to our year-end appeal, we raised an extra $5,000 to provide access to free genetic testing for inherited retinal disease patients. Learn more about testing here: https://t.co/LAgtu9pqS7 #KnowYourGene @fightblindness
Happy New Year! 🎉 Help us close out 2019 on a high note - https://t.co/72xg6dPMqP https://t.co/s1uPBc9Cf0
Just this week, we heard from a family who put their child's genetic testing on hold because of how much they were told it would cost. Every dollar you donate to us thru 12/31 will go toward funding genetic testing. https://t.co/PWfeDX0gk3 #inheritedretinaldisease
We might be crying a little.
"It's the same conversation everywhere I go," Hawkins said. "They say, 'I sat in a cell for 20 years, but when I touched my first dot of Braille, it healed me.' "
Women inmates helping themselves, others through Braille
www.theday.com
East Lyme — The nine women inmates chosen for the first Braille class offered at the Janet S. York Correctional Institution cursed at times,FREE WEBINAR
The Food and Drug Administration (FDA) understands that patients and their caregivers are the experts on what it is like to live with their condition. This is why the FDA wants to hear from you!
Join us on our next webinar as key FDA staff share information about programs designed to incorporate patient and caregiver voices into drug and device development. In addition, you will learn how your stories and experiences can enhance patient-focused outcomes.
This webinar is perfect for patients, caregivers, advocates, students and the public.