Welcome to The Usher Syndrome Foundation

Our organization's most important goal is to generate financial resources to support Usher Syndrome research. Our dedicated directors and members have come together in an effort to help support research programs focused on the development of treatments that will slow the affects of this disease, stop the deterioration of retina cells and reverse the effects of Usher Syndrome, the leading cause of deaf-blind diseases. With our devoted supporters we can help the medical community find a cure.


Our kick-off fundraiser, a Valentine's Day Dance and Auction, was extremely exciting and successful. We could not be happier with the outcome of our first event. We would like to thank everyone who donated, the USF committee who spent countless hours planning the event, and our large group of volunteers who helped make the evening come together.

See the list of items that were up for auction and a note about the evening from founder, Theresa Bettlach-Cacciatore.

 

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  • Inspiration

    Megan O’Neill, born with a moderate hearing impairment, was studying to be an architect at the University of Kansas when it was discovered that an increased difficulty with her vision was actually due to Usher syndrome. A condition we had never heard of until that day. At 23 years of age, Megan is already considered legally blind.Find out more about Megan

  • About Usher Syndrome

    About 20,000 people in the United States have Usher syndrome. It is the leading cause of combined deafness and blindness world wide. At this time there is no cure for Usher syndrome and treatments are experimental. As it is the rarest form of RP (retinitis pigmentosa), it is afforded the least amount of funding from organizations that raise money for research of RP and other forms of blindness.Find out more about Usher Syndrome