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Our Story

Who We Are

Usher 1F Collaborative is a 501c3 nonprofit foundation whose mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.

In 2013, the Chaikof family founded Usher 1F Collaborative because two of their three children are affected by the disease. In 2015, the Root family joined them when their little boy was also diagnosed with Usher 1F. Saving vision is a race against time, with the window narrowing as more time passes without an effective treatment.

We are the Usher 1F Collaborative because achieving a cure requires a group effort. Over the past six years, we have brought together affected families working as a team across the globe, from the east and west coasts of the United States to Canada, Australia, Israel, and Sweden. 

Much of the research into a cure for retinitis pigmentosa is genotype specific. When Usher 1F Collaborative was founded in December 2013, there was minimal research for type 1F. Today, we have provided significant funding to five major research labs and partnered with two others that specialize in Usher Syndrome research.

Right now, parents of children with type 1F are sitting and watching their children’s vision fade while clinical trials for other Usher genotypes are offering encouragement and hope to others.  Yet, we can only sit by and watch this disease rob our children of their chance for a full and vibrant life. Please help make hope a reality for those with Usher 1F.


Mission: The purpose of Usher 1F Collaborative is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.

Vision: Working together, we can ensure that no child will face an ever darkening world from Usher Syndrome type 1F and no adult will live in darkness and silence.