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.
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.
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