Supporting the LCA Community

We see a cure for blindness

Baby with Leber Congenital Amaurosis
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Living with LCA

Since 2014, we’ve supported the LCA community with education, resources, and connections that strengthen and unite individuals and families across the IRD community.

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Get Involved

Our donors and corporate partners drive our mission, helping us impact lives of those with LCA and rare IRDs. Learn about events, sponsorships, and partnerships.

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Finding a Cure

By supporting the ecosystem that develops treatments for blinding diseases, we can advance therapies to approval. Join us in making these breakthroughs possible.

Episode 8 graphic of the Hope in Focus podcast

Episode 8 – Odylia Therapeutics: Moving LCA6 Research Forward

Dr. Ashley Winslow is the CEO and Chief Scientific Officer of Odylia Therapeutics, a nonprofit biotech organization accelerating gene therapies for rare diseases, including Leber congenital amaurosis (LCA). Under her leadership, Odylia is advancing a gene therapy program for LCA6 caused by mutations in the RPGRIP1 gene. In this episode, Ashley shares how she entered […]

Courtney Coates and Ben Shaberman on stage

Reports on Gene Therapy Advances: A Highlight from the 2025 Hope in Focus Conference in Minneapolis

Gene therapy is unequivocally the most advanced approach for treating retinal diseases like Leber congenital amaurosis (LCA). Of course, there’s LUXTURNA® which is FDA-approved and has restored significant vision for people with LCA caused by RPE65 mutations. But several other emerging gene therapies are, or will soon be, in clinical trials. Excitingly, some are restoring vision early in human studies. […]

The Denise D’Ascenzo Walk to Fight Rare Diseases logo

Walk to Fight Rare Diseases

April 25, 2026 • Quinnipiac University campus in Hamden, CT. Join us for the Denise D’Ascenzo Foundation Walk to Fight Rare Diseases at the beautiful Quinnipiac University campus in Hamden, CT. The event honors the life of Denise D’Ascenzo and brings our community together in strong support of research and care for rare disorders. Make […]

27+

genetic mutations can cause LCA

$2.5M+

raised to support research and community programs

32+

countries in our global reach