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 is LSA?

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.

 
Editas
Mystic Aquarium
Spark
Simply Majestic
Mohegan Sun
Eye Care Expressions
LM Hospital
Dominion
MeiraGTx
Sanofi Genzyme
 

Let’s Get Social!


It's Genetic Testing & Awareness Week! We are proud to be a financial supporter of My Retina Tracker, and we have been able to provide free access to genetic testing for dozens of families through our efforts.
https://t.co/pYfa0wmc6o #KnowYourGene @fightblindness

Happy Mother's Day to all our warrior moms out there. You inspire us every day on our mission.
https://t.co/vx57b4sLWG #MothersDay #LCA #IRD #WarriorMoms

Thank you to @AGTC_ for putting together not 1, not 2, but THREE teams in our Social Distancing Scavenger Hunt. There's still time to join this FUNdraiser ... it goes until May 20!
https://t.co/3fm1aQR25w #SocialDistancing #ScavengerHunt

Please join @RareDiseases Connecticut Rare Action Network (RAN) Virtual COVID-19 Discussion Group to connect as a community to exchange stories and experiences with respect to the impact of COVID-19. 5/12; 12:30pm https://t.co/BKRsb8nACW

1 week ago

Sofia Sees Hope

Thank you Meira GTx for having such an amazing team in our Social Distancing Scavenger Hunt! Your enthusiasm, creativity and humor were such fun to watch. And this ... well ... we’re a little speechless right now.

#Repost @amysteelebags with @get_repost
・・・
During the Covid-19 lockdown, I joined the @meiragtx team in doing a charity scavenger hunt benefitting @sofiaseeshope, an advocacy group supporting those affected by rare inherited retinal diseases. One of the hunt challenges was to showcase a rare talent so I made a monogrammed suede pouch. First time I've monogrammed in Braille! This time I added gold metal rivets to add tactility. Sofia, I really hope we spelled your name correctly!
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