Tips for Parents

Join the USH Trust. Current research is hindered because we are not in touch with enough individuals and families with Usher syndrome. We also use the USH Trust to connect individuals and families  By registering, you help to build the community and become a part of the solution to understanding Usher syndrome and developing treatments and cures. Visit usher-registry.org to sign up. 

Join the community. You are not alone. There are many ways to become part of a community of support that understands your experiences and can share theirs. The USH Blue Book connects individuals and families affected by Usher syndrome via email. This community is a tremendous resource when you have questions, as well as a great resource for tips and positive anecdotes that can provide encouragement.

Our USH Connections Conference provides a venue to meet other families and individuals with Usher syndrome face-to-face while learning about the latest research. The location of the conference changes every year to encourage people from different parts of the country, and the world, to participate.

Take care of yourself. The diagnosis may still be fresh in your mind. You may be overwhelmed by details or you may be propelled to do everything you can. You might want to start by joining a FB Group for "Usher Moms" or monthly Family 2 Family Community (F2FC) Zoom calls, where you'll meet other parents of kids with Usher syndrome. For more information about these calls, email Carly or Pam at avasvoice@gmail.com 

Blogs about Parenting

  • Shanna Dewsnup is mom to Brendan, who has Usher syndrome and a musician. Shanna is also an audiologist, and one of 2 USH Ambassadors in Arizona.

  • In this video from our USH Partner, Ava's Voice, parents of kids with Usher syndrome talk about how they felt when they received their child's diagnosis of Usher syndrome. Also shows the children of these parents and how they experienced the diagnosis.

  • Deciding when to tell your child that they have Usher syndrome, and how to tell your child their diagnosis, can be a daunting decision. This letter was written by a group of adult students at the Helen Keller National Center in 1994, and describes their feelings about getting the news about their diagnosis from their parents.