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!
COVID has meant endless pivoting for us w/ events. We've been working with @GiveSmartUSA to create a mission-focused, fun & unique online auction. Stay tuned as we roll out more details in the coming days. It goes live Oct. 8, which is #WorldSightDay.
https://t.co/PFrQlq6yz5
Our Fall 2020 newsletter is out! Meet Jordynn, a 4yo with more energy than all of us, living her best life with #LCA. Research updates from #VISIONS2020. How Jack lived through #COVID in Canada with LCA. And more! https://t.co/qBZArDTdBG @fightblindness
It has been the most amazing experience to watch our mission literally come to life with Danielle. Bringing together the #LCA community to share information and support is an important part of what we do. We are so happy to have been a part of this.
https://t.co/IsOzWAyIQT
You might think a newborn is too young for vision screening, but you’d be wrong! Early screening is key to early diagnosis and intervention! https://t.co/bxo1DeTJv1
COVID has meant endless pivoting for us in terms of events. We've been working with GiveSmart to create a fun and unique online auction that speaks to our mission and our supporters' sense of philanthropy.
Stay tuned as we roll out more details in the coming days. It goes live Oct. 8, which is World Sight Day.
sofiasees.org/event/bidding-in-the-dark/
Bidding in the Dark - Sofia Sees Hope
sofiasees.org
This event includes bidding on items to support Sofia Sees Hope, but we will not provide any visuals, and descriptions will be limited.Our Fall 2020 newsletter is out! Meet Jordynn, a 4-year-old living with LCA in upstate New York. Hear from Jack, how he navigated COVID during the lockdown in Canada. Research updates from the VISIONS 2020 conference. And more!
sofiasees.org/wp-content/uploads/2020/09/seeing-hope-newsletter-fall-2020.pdf