UsherKids Australia

UsherKids Australia is an Australian not-for-profit organisation established in early 2016 to support the unique needs of children with Usher syndrome and their families within Australia. Usher syndrome is a rare genetic condition characterised by hearing loss or deafness, progressive vision loss due to retinitis pigmentosa (RP), and in some cases vestibular dysfunction. The organisation was co-founded by Emily Shepard and Hollie Feller, two mothers whose sons were diagnosed with Usher syndrome. After struggling to find other families and reliable information, they connected through a newspaper article and later travelled to the International Symposium on Usher Syndrome in Boston in 2014. This experience inspired them to build an Australian community for families affected by Usher syndrome. UsherKids Australia provides direct support to parents and families, creates a conduit for clinicians, researchers, service providers, educators and the broader community, and offers online learning and member resources. The organisation also runs community events, such as the Usher Syndrome Awareness Day celebration and book launch planned at the University of Sydney in September 2026. It holds Charity and Deductible Gift Recipient (DGR) status from the Australian Charities and Not-for-profits Commission (ACNC), meaning donations over $2 are tax deductible. The organisation's purpose is to see children and young people with Usher syndrome and their families love their lives, and its commitment is to empower the Usher community through support, connection and knowledge. It operates primarily in Australia and serves as a central hub for information about Usher syndrome types, practical resources, and personal stories.

UsherKids Australia was founded in early 2016 by Emily Shepard and Hollie Feller, two mothers whose sons were diagnosed with Usher syndrome. In 2013, Emily Shepard learned that her son had Usher syndrome. She and her husband sought to connect with other families and learn about the rare condition, but found it difficult due to its rarity. A newspaper article about her son, which featured a helicopter ride with Air Ambulance Victoria in the Herald Sun, led Emily to connect with Hollie Feller, another mother living in a nearby suburb whose son had also been diagnosed. United by their shared experience, the two women set out to find other families and gather knowledge. In 2014, they travelled to the International Symposium on Usher Syndrome in Boston, where they met Dr Ed Stone and attended the Usher Syndrome Coalition Conference. This experience inspired them to build an Usher syndrome community in Australia so that families like theirs would have somewhere to turn for support, connection, and syndrome-specific information. This led to the creation of UsherKids Australia in early 2016. The organisation was established as a not-for-profit specifically to support the unique needs of children with Usher syndrome and their families within Australia. In addition to providing direct support to parents and families, UsherKids Australia works to create a conduit for clinicians, researchers, service providers, educators, and the broader community. The organisation has since grown to offer online learning, a member section, and community events. It holds Charity and Deductible Gift Recipient (DGR) status from the Australian Charities and Not-for-profits Commission (ACNC). In 2026, it planned a special event at the University of Sydney to celebrate Usher Syndrome Awareness Day and launch a book titled 'Usher Syndrome: About Us, by Us'.

• 2026

  Planned event at University of Sydney for Usher Syndrome Awareness Day and book launch.

• 2016

  UsherKids Australia is founded in early 2016.

• 2014

  Emily Shepard and Hollie Feller travel to the International Symposium on Usher Syndrome in Boston.

• 2013

  Emily Shepard's son is diagnosed with Usher syndrome.

A community-driven not-for-profit focused on support, connection and knowledge for families affected by Usher syndrome in Australia.

• Online Learning

  Online learning resources for the Usher community.

• Member Section

  A dedicated section for members.

• Support Resources

  Practical resources and personal stories for support.

• Usher Syndrome Information Sheet

  A downloadable information sheet about Usher syndrome.

1. 1UsherKids Australia | Usher Syndrome Support Australiausherkidsaustralia.com
2. 2Our Story - UsherKids Australia | Usher Syndrome Support Australiausherkidsaustralia.com
3. 3About - UsherKids Australia | Usher Syndrome Support Australiausherkidsaustralia.com
4. 4UsherKids Australia - Wikidatawikidata.org