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.

The Hope in Focus podcast graphic with Ben Shabeman and Vivien Hillgrove

Episode 9 – Vivien’s Wild Ride: Who Am I Without Vision?

Vivien Hillgrove led a remarkable 50-year career as a film editor for box office hits such as  Amadeus, Blue Velvet and The Right Stuff. However, when she began losing her sight to age-related macular degeneration (AMD), she was faced with the challenge of redefining herself, how she moved through the world, and was forced to […]

Updates on LCA10 and USH2A Therapies

Promising RNA Therapies for LCA10 and USH2A Move Back into Clinical Trials

Moving emerging therapies through clinical trials and across the finish line is often challenging—and in some cases, harrowing. Many treatments never make it. In early 2022, the future looked bleak for ProQR Therapeutics’ two RNA therapies in clinical trials. The biotech company reported that sepofarsen, its RNA therapy for LCA10 (IVS26 mutation in CEP290), did […]

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