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!
We planned an annual report as a general update on where Sofia Sees Hope is positioned in the realm of inherited retinal disease research & advocacy. It became what we like to call our "yearbook" - from how we started to we are looking to do in the future. https://t.co/G4BwpfA5BK https://t.co/X1nE76eR9d
We welcome Jill Dolgin to our "Let's Chat About ...” Sept. webinar! Jill is responsible for incorporating the voice of the patient throughout drug development and in the corporate culture @AGTC_ https://t.co/LO21Yupvl0
It's an honor to be included in this story about NPOs' beginnings. Thank you @fightblindness for working with small groups such as ours, @rphope_org and @savesightnow to move research and advocacy forward for inherited retinal disease. https://t.co/bUlQ4Ns44l
We’re thrilled to see @nytimes @dealbook highlighting the importance of passing #BioBonds legislation to fund critical #biomedical #research for treatments and cures across a wide spectrum of diseases.
https://t.co/QRs8Q11beT
Deeply disappointing but we applaud Becca’s strength in standing up for accessibility and disability rights.
This deaf-blind Paralympian was told to navigate Tokyo alone. So she quit Team USA.
www.washingtonpost.com
A gold medalist in Rio, Becca Meyers didn't want to be left without her personal care assistant again.
It's an honor to be included in this story about NPOs' beginnings, and the work that goes into running an organization. Thank you Foundation Fighting Blindness for working with small groups such as ours, RP Hope and Save Sight Now to more research and advocacy forward for inherited retinal disease.![]()
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www.fightingblindness.org/resources/causes-for-cures-165
www.fightingblindness.org
The faces behind RP Hope, Save Sight Now, and Sofia Sees Hope are all immensely dedicated to their nonprofit’s missions. The inspiration behind these organizations is similar, but their story and commitment are uniquely personal.