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Resources for parents of youth with Usher syndrome


  • Annual USH Connections conference. This year it will be in Austin, TX. Last year, we contracted with our partner agency, Ava's Voice, to provide a program for kids, birth to 17, while their parents attended the lectures. It was a big hit and we're running an even better version of it this year. It's a great way to meet other kids, young adults and counselors with Usher.
  • Ava's Voice hosts USHthis Summer Youth Camp for campers with Usher syndrome, ages 11-14. Youth with Usher syndrome, ages 15-17, can apply to be counselors in training, and young adults with Usher, ages18 and older, can apply to be a lead counselor. Ava's Voice is an official partner of the Usher Syndrome Coalition. For more information about camp, go to Ava's Voice FB page:


  • Sign your child up in our USH Trust registry, the largest international registry exclusively for the Usher community. It will assure that they get the latest info on research and will also help us to grow and and connect the Usher community across the country and around the world


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