In 2013, Hollie and Daniel Feller stumbled upon a seemingly inconsequential article about a young boy with Usher syndrome, a rare genetic disorder that causes vision and hearing loss. As they researched the condition, they discovered their own Ashkenazi Jewish heritage put their son at risk. Desperate for support and information while they investigated genetic testing to confirm their worst fears for their son Harry (just 3 years old), the newspaper article led the Fellers to connect with Emily Shepard and her son Louis also in Melbourne.

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. This took place only 4 months after Harry’s formal genetic diagnosis was confirmed. This diagnosis was handed to them through VCGS on Rare Disease Day 2014 and RDD this year marks the 10-year anniversary of a genetic diagnosis that changed their lives forever. The International symposium experience inspired Emily and Hollie to band together and create UsherKids Australia, a support organization for families affected by the condition in Australia. With guidance from the Genetic Support Network of Victoria, they navigated the process of setting up the organization and began recruiting members across Australia.

UsherKids Australia provides direct support to parents and families of children with Usher syndrome, as well as creating opportunities for clinicians, researchers, educators, and the general public to learn about the unique needs of these children. They have organized conferences, developed an Online Learning Hub, and created resources for families and professionals. Through collaboration with other Usher syndrome support organizations worldwide, UsherKids Australia also connects families to the wider Usher syndrome community.

The organization has grown significantly over the past 10 years and now represents almost 100 children. Hollie and Emily have worked as volunteers, applying for grants and fundraising to provide resources for the community and build a small team to support their work.
In 2020, Hollie joined the Genetic Support Network of Victoria(GSNV) in a part-time administrative role to expand her knowledge of the rare disease sector. Emily pursued an undergraduate and Masters Degree in Public Health, bringing additional expertise in strategic planning, education, and research to UsherKids Australia.

UsherKids Australia’s mission is to empower the Usher community through support, connection, and knowledge. The founders have dedicated their time and efforts to ensure that families affected by Usher syndrome have the resources and support they need. For more information on their achievements, visit their website at www.usherkidsaustralia.com

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