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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 five 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, Israel, and Australia. 

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 four major research labs that specialize in Usher Syndrome research:

  • Monte Westerfield, Ph.D., at the University Of Oregon Institute Of Neuroscience, has developed a zebrafish model of the Usher 1F mutation and is using it to test drugs that hold the potential to halt or slow the progression of vision loss.
  • Zubair Ahmed, Ph.D., at the University of Maryland, has developed a mouse model of the Usher 1F mutation that he is now using both to test potential drug treatments and to develop gene replacement therapy for Usher 1F.
  • Livia Carvalho, Ph.D., at the University of Western Australia, is collaborating with Dr. Ahmed to develop gene replacement therapy for Usher 1F.
  • Edwin Stone, M.D., Ph.D., at the University of Iowa Institute for Vision Research, is developing gene replacement therapy, a technique used successfully for other types of retinitis pigmentosa, to replace the mutated gene in the eye, as well as stem cell therapy using patients’ own skin cells, to halt further progression of vision loss and restore lost vision.
  • David Corey, Ph.D., at Harvard Medical School, has assembled an international team to develop gene therapies for Usher 1F. He has independently raised over $1.2 million in funding for this effort.
  • Alex Hewitt, Ph.D. and Alice Pebay, Ph.D., Center for Eye Research Australia, have received $635,000 from the Australian government to develop gene therapy for Usher 1F. They are part of our partnership with the Feller family in Melbourne, Australia, whose little boy Harry has Usher 1F.

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.

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