Our Story

In 2009 at the age of 4, our daughter Olivia was diagnosed with a rare degenerative retinal disease called Lebers Congenital Amaurosis (LCA) due to the CRB1 gene mutation. This disease causes progressive vision loss and there currently is no cure.

Together with other families of children diagnosed with similar diseases specific to the CRB1 gene mutation, we are raising money to fund research towards a cure. Without a cure, Olivia will continue to lose her vision until it is gone. Most likely by the time she reaches early adulthood. Many children in our group have already lost a significant amount of their vision already. Together our families have formed the Curing Retinal Blindness Foundation. By the end of 2013 our families had raised enough money to begin financing five separate research projects. You can see more details of these projects as well as other information on our foundation on our website, www.crb1.org.

We will not stop until a cure and treatment is found for our children to not only put a stop to this progressive disease but to also restore lost vision.

Thank you for visiting our site, please visit our other pages and check out our fundraising events. You can also see more information about Olivia on our facebook page Eyes for Olivia.

The Hoffmans
Mike and Kim, Sarah, Olivia and Sean

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