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Family Starts Nonprofit for Cure for Cause of Deaf-Blindness in Jews

Usher Syndrome is a genetic disease that is the leading cause of deaf-blindness in the world, particularly affecting Ashkenazi Jews, 2% of whom carry the recessive gene for type 1f. Type 1 is the most severe. Those affected are born profoundly deaf with impaired balance; then, retinitis pigmentosa causes them to gradually lose their vision, first with night blindness in early childhood, followed by increasingly narrowing tunnel vision, progressing eventually to total blindness.

Much of the research into a cure for retinitis pigmentosa is specific to a particular mutation. The Chaikof family of Newton, Massachusetts, learned that while there is research funding for many of the other subtypes and even a clinical trial for one type, currently no research or funding for type 1f exists. One of the major reasons is the lack of an animal model, which is necessary for implementing clinical trials for those with type 1f.

Elliot Chaikof, Surgeon-in-Chief at Boston’s Beth Israel Deaconess Medical Center, and his wife Melissa founded Vision for a Cure because two of their three children, Rachel and Jessica, are affected by the disease. While the girls hear and speak well thanks to cochlear implants, saving their daughters’ vision is a race against time, with the window narrowing as more time passes without an effective treatment.

The initial goal of the foundation is to fund the creation of an effective mouse model for Usher Syndrome type 1f. Subsequently, funding research for a cure using this mouse model will follow. It is imperative that we fund research to cure Usher Syndrome type 1f so that all Jewish children will have the opportunity to see the future.

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