Supporting the LCA community
We see a cure for blindness
Join us for the LCA Family Conference!
June 20-21, 2025 • Embassy Suites, Minneapolis, MN
This conference will provide information about advances in research, deepen your understanding of various stakeholders’ roles in developing treatments, and provide an opportunity for those living with rare inherited retinal disease and those involved in developing treatments to learn from each other.
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 as Sofia Sees Hope, Hope in Focus 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 Hope in Focus.
Let’s Get Social!
[fts_twitter twitter_name=SofiaSeesHope tweets_count=4 cover_photo=no stats_bar=no show_retweets=no show_replies=no]
Join us this summer to Party for Sight! ![]()
We are excited to introduce our new fundraiser to raise awareness and funds for Leber congenital amaurosis (LCA) and other inherited retinal diseases (IRDs). ![]()
Ready to start? It's simple! Plan a gathering or party with friends and family, share some rare disease facts, and ask your guests to contribute. ![]()
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To learn more, text "PARTYFORSIGHT" to 71777 or visit this link: loom.ly/ScmJiKk ![]()
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Image Description in comments.![]()
#PARTYFORSIGHT2025 #Awareness #HopeInFocus #LCA #LeberCongenitalAmaurosis #BlindCommunity #LowVision #VisuallyImpaired #Inclusion
Last week, our team member Eve Orcutt completed her first year of training in the Professional Patient Advocates in Life Sciences (PPALS) Certification at Sanford Research in South Dakota. The program offers two tracks, one for patient advocates and one for those in industry, covering key areas like research, drug development, communications, and public policy. With small class sizes and a collaborative environment, participants gain knowledge about serving patient communities and learning from field leaders.![]()
Eve is excited to apply this knowledge to strengthen our advocacy, better support families, and enhance our understanding of research and resources for the LCA community.![]()
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Image Description in comments.![]()
#blindcommunity #lowvision #visuallyimpaired #inclusion #LCA #lebercongenitalamaurosis #HopeInFocus #ppals #sanford