USHearts

Regardless of where you find yourself in your journey, there is a place for you to connect with your community, learn about valuable resources and programs to make connections.

USHchats

USHchats, derived from the Family 2 Family Community Calls model under the guidance of the National Center on Deafblindness, has grown into a global initiative thanks to the overwhelming support from the Usher syndrome community. Ava’s Voice, UsherKids Australia and Usher Kids UK are proud to present USHchats. A special thank you for the support from our community partners: the Usher Syndrome Coalition, Usher Syndrome Ireland, and Save Sight Now Europe.

This monthly virtual connection via Zoom is designed specifically for parents and guardians of children and young people with Usher syndrome (birth to 25 years). USHchats is a safe space to make immediate connections with the Usher syndrome community, ask burning questions, and learn from other families navigating their own journeys with their children.

USHangouts

USHangouts, hosted by Ava’s Voice, is a signature program offered at the biannual Usher Syndrome Coalition USH Connections Conference. This program provides youth with Usher syndrome, their siblings, or children of adults with USH (birth to 17 years) the chance to build meaningful connections with peers who share similar experiences. To best serve their needs, USHangouts offers activities tailored to two age groups:

Onsite programming is facilitated by Ava’s Voice Board Member and Speech-Language Pathologist, Kristina Grieci, alongside USH sibling Miley Fredericks.

Off-site activities are led by Mentors with Usher syndrome under the guidance of an Ava’s Voice team member. These youth participants explore the local area and engage in camp-style activities designed to foster independence and camaraderie.

Mentor opportunities for eligible individuals with Usher syndrome, ages 18-25.

No matter where your child is in their journey with Usher syndrome, USHangouts offers a welcoming space for them to meet and connect with others who truly understand their experiences.

USHvoices Advocacy Fair for youth and young adults with Usher syndrome (up to age 25) can showcase ways they educate their families, friends, and local communities about Usher syndrome. This is a chance for them to share the advocacy efforts they’ve been involved in, no feat is too small. Have they spoken out about accessibility issues? Educated their peers about their communication in their class or for their school? Raised awareness about Usher Syndrome in their local community? Created resources to help others? We want to hear about it! Similar to a science fair project, participants design a poster that represents their advocacy work. Content may include a description of their advocacy project or initiative, photos or illustrations to highlight it, the impact they made, and/or tips or resources to make it their own to meet their needs in their local communities. Showcase their advocacy at the next USH Connection Conference.

discUSH Family Retreat

Coming soon! Subscribe to stay updated on details for upcoming discUSH Family Retreats.