Our Story

A helicopter ride with Air Ambulance Victoria was featured in the Herald Sun. This article prompted Hollie and her husband to have their son Harry tested for Usher syndrome, ultimately leading Emily and Hollie to unite over their son’s diagnosis

Parents Emily and David Shepard at the 2014 Usher Syndrome Coalition Conference in Boston talk to Dr Ed Stone

In 2013, Emily Shepard (UsherKids Australia Co Founder) found out her son had Usher syndrome. Emily and her husband were understandably desperate to connect with other families who had experience with Usher syndrome, find support, and learn as much as they could about their son’s new diagnosis. Their search proved to be difficult as the condition was so rare and there was no easy way to find other families in their situation. A newspaper article about her son led Emily to connect with Hollie Feller (UsherKids Co Founder) and her family, living in a nearby suburb. Once united, these determined mums set off to find other families like theirs and the knowledge they needed, leading them to travel to the International Symposium on Usher Syndrome in Boston in 2014. The experience sparked a desire in them to build an Usher syndrome community in Australia so families like theirs would have somewhere to go for support, connection, and syndrome specific information. This led to the creation of UsherKids Australia in early 2016.

UsherKids Australia is a non-for-profit organisation established specifically to support the unique needs of children with Usher syndrome and their families within Australia. In addition to providing direct support to parents of children with Usher syndrome, and their families, UsherKids Australia works hard to create a conduit for clinicians, researchers, service providers, educators, and the general public to gain a greater understanding of the specific clinical, educational, and social needs of children with Usher syndrome.

Over the years UsherKids Australia have delivered biennial conferences, built an Online Learning Hub, and developed Usher syndrome resources for families and professionals. The UsherKids Australia community of families and professionals has grown substantially since it began. Through collaboration with other Usher syndrome support organisations around the world, UsherKids Australia also provides their families with connection and access to the wider Usher syndrome community.

Thanks to a National Disability Insurance Scheme (NDIS) Information, Linkages and Capacity Building (ILC) grant the UsherKids Australia team expanded in May 2021 with the addition of a dedicated case coordinator and program coordinator.

The organisation’s purpose is to see children and families living with Usher syndrome love their lives. Our mission is to empower the Usher community through support, connection and knowledge.

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