Tips for Parents
Join the USH Trust registry. Current research is hindered because we are not in touch with enough individuals and families with Usher syndrome. 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 annual 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 firstname.lastname@example.org