The Usher Team - UsherKids Australia | Usher Syndrome Support Australia

Our Team

Hollie Feller – Director & Board Member

Hollie Feller, Co-founder and Director of UsherKids Australia, passionately advocates for early Usher syndrome diagnosis through genetic testing. She is committed to educating clinical professionals and providing nationwide family support. Juggling responsibilities at the Genetic Support Network of Australia and her roles with UsherKids Australia and the Paediatric Vision Impairment Alliance, Hollie contributes significantly to the community. Her dedication to advancing research and information-sharing for the current generation of Usher syndrome children is evident in her multifaceted roles. Hollie’s profound commitment to making a lasting impact is reflected in her tireless efforts within the field of Usher syndrome advocacy and support.

Emily Shepard – Director & Board Member

Emily Shepard, CEO of UsherKids Australia, is an unwavering advocate dedicated to improving the lives of children and young people with Usher syndrome and their families. In addition to her role as a committed committee member of the Australian Newborn Hearing Screening Committee, Emily actively contributes to various organisations. As a committee member of the Paediatric Vision Impairment Alliance, Deafblind International Usher Network, and Deafblind Centre of Excellence Reference Group, she channels her expertise and passion into driving positive change. Emily’s leadership extends beyond UsherKids Australia, and her commitment to enhancing clinical awareness and parental support for Usher syndrome underscores her comprehensive approach to advocacy and service.

Tracey Jonston

Case Coordinator

Tracey is a Senior Teacher and Consultant with NextSense (formerly RIDBC). Her knowledge and experience working with families of children with sensory impairments spans over two decades. Tracey will provide guidance to families particularly in the early years after diagnosis to reduce isolation, increase support and service provision to improve the longterm health and well-being of our families. Tracey will assist UsherKids Australia in the implementation of our National Disability Insurance Scheme (NDIS) Information, Linkages and Capacity Building (ILC) grant by working directly with families and healthcare professionals to improve skills and capacity.

Lauren Johansen

Project Coordinator

Lauren is a PhD student and research assistant with a background in psychology. She has a wealth of experience working with children and youth, especially those with autism and anxiety. She is passionate about supporting and advocating for parents and caregivers within the healthcare system and we are really excited about what she can bring to our organisation. Lauren will assist UsherKids Australia in various projects that are aimed to support the health and well-being of parents, carers and families of children with Usher syndrome in Australia. These projects will address some of the key barriers families face with raising a child with this complex condition, including gaps in addressing the psychosocial impacts of the condition on all members of the family unit.

Lisa Kearns – Board Member

Lisa Kearns is a Senior Orthoptist with a Postgraduate Diploma in Genetic Counselling. Lisa co-ordinates the Ocular Diagnostic and Ocular Genetic Clinic at the Royal Victorian Eye and Ear Hospital and provides clinical eye and electrodiagnostic testing. As a research orthoptist at the Centre for Eye Research Australia, Lisa works with families on multiple research studies into inherited eye disease. Lisa has a particular interest in inherited retinal dystrophies, including Retinitis Pigmentosa and Usher syndrome. Through CERA, Lisa manages research projects aiming to use cutting edge stem cell technology to understand blinding eye disease and ultimately facilitate clinical trials and new treatments.

Lisa’s knowledge of Usher syndrome combined with her talent and passion for improving people’s lives make her an incredibly valuable addition to the UsherKids team. She brings new insights and helps guide the organisation to continue to improve and expand its services.

Lauren Ayton – Board Member

Associate Professor Ayton is a renowned global leader in the field of low vision and blindness research. In her current role at the University of Melbourne and Centre for Eye Research Australia (CERA), Associate Professor Ayton leads a team investigating inherited retinal diseases including Usher syndrome. Her research includes new methods for assessing eye health and function, evaluation of progression over time and interventions such as gene therapy.

We believe that Associate Professor Ayton’s expertise and dedication align perfectly with UsherKids Australia’s vision and objectives. Her commitment to finding solutions for those affected by Usher syndrome, coupled with her passion for creating a more inclusive and supportive community, will undoubtedly strengthen our board and the impact of our organisation.

Please join us in welcoming Associate Professor Lauren Ayton to the UsherKids Australia Board. We look forward to the positive influence and contributions she will bring to our organisation.