A helicopter ride with Air Ambulance Victoria was featured in the Herald Sun. This article promoted 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
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.