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!
#GivingTuesday is December 1. The challenges we have all faced this year have at times felt insurmountable, but we always had hope. We still do. It's why we've kept working to continue to be able to fund free genetic testing & scientific research for IRDs. https://t.co/s9p3JgK2dj https://t.co/9VgG8MJePw
Starting to think about holiday shopping? We have fun SSH-branded @YETICoolers coffee and wine mugs, and a cocktail “cookbook” autographed by master mixologist Dale DeGroff, all to benefit IRD research! https://t.co/5g0GV9aEGJ
The pandemic slowed us down a little, but we are excited to introduce our Sofia Sees Hope Ambassadors! They will educate and advocate for the Leber congenital amaurosis community around the globe.
Welcome!
https://t.co/VtriSmmDor #LCA #RetinalDisease
Years ago, when we first received our daughter Sofia’s diagnosis of Leber congenital amaurosis, a rare inherited retinal disease that causes low vision and blindness from birth, we weren’t given much hope. At that time, there were no approved treatments or trials underway, and we didn't know of anyone else with the disease.
In fact, we were told the best we could hope for was that the disease would progress slowly, and if she were lucky she would retain some perception of light through the end of high school, maybe even into her twenties.
Sitting at our kitchen table with close friends, we decided no hope wasn’t an option.
Do you sense a theme here?
If this year has taught us all anything, it's that having hope is always an option. In fact, it's part of our survival mode, our coping mechanisms, our will to move forward.
The challenges we have all faced this year, alone and together, have at times felt insurmountable, but we always had hope. We still do. It's why we've kept working, adjusting and changing, to continue to be able to fund free genetic testing and scientific research.
On this Giving Tuesday (December 1), we hope you can support us.
sofiasees.org/donate/