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 are excited to be able to connect with the great team at @editasmed today! And also glad the event is indoors! https://t.co/UE6WeRndzi
Clinical trials are not for the benefit of participating patients. At the heart of a clinical trial is that researchers do *not* know what’s going to happen. https://t.co/CvCtlwWuRB
Photos from Dinner in the Dark are posted! Tag yourselves in our Facebook album. Thank you Mary-Jo Shultis for your always amazing work! https://t.co/h9PlDFPxG7
Our friends at Two Blind Brothers have an interesting proposition this holiday season.
One of the most common themes in questions we receive is "clinical trials." Parents of LCA kids and LCA patients themselves are always asking about and looking for information on a possible clinical trial for their specific genetic mutation. To many, clinical trials = treatment/cure for their genetically caused vision loss. But it's far more complicated than that.
We hosted such an informative panel at our LCA Family Conference in July. Learn more about the insights these researchers and regulators offered:
Foundation Fighting Blindness
U.S. Food and Drug Administration
All About Clinical Trials - Sofia Sees Hope
sofiasees.org
Clinical trials are not for the benefit of participating patients. At the heart of a clinical trial is that researchers do not know what’s going to happen.