Hollie Feller – Director & Board Member

Hollie Feller is the Co-founder and Director of UsherKids Australia and a passionate advocate for early diagnosis and equitable support for children with Usher syndrome and their families. With a strong focus on the role of genetic testing in early identification, Hollie works to educate clinicians and empower families to navigate their child’s care with confidence.

Drawing on her expertise in rare disease and her position at the Murdoch Children’s Research Institute, Hollie plays a vital role in advancing research collaborations that inform UsherKids Australia’s programs and resources. She is deeply committed to ensuring Australians affected by inherited retinal disease have equitable access to clinical trials and emerging treatments.

Through her leadership, Hollie continues to strengthen connections across the health, research, and rare disease sectors, driving greater awareness, understanding, and support for the Usher syndrome community nationwide.

Emily Shepard – Director & Board Member

Emily Shepard is the CEO and Co-founder of UsherKids Australia and an unwavering advocate for children and young people with Usher syndrome and their families. Drawing on her lived experience and deep commitment to equitable care, Emily works to improve early diagnosis, clinical awareness, and family support across Australia.

Through a strong research collaboration with the University of Melbourne, Emily is helping to create the evidence base that informs UsherKids Australia’s programs and drives systemic change. Her leadership also extends to mentoring students and emerging clinicians, fostering the next generation of professionals equipped to understand and support families impacted by Usher syndrome.

Beyond her work with UsherKids Australia, Emily serves as a valued committee member of the Australian Newborn Hearing Screening Committee and contributes to numerous national initiatives focused on improving outcomes for people who are deaf, hard of hearing, or have vision loss. Her collaborative, family-centred approach continues to inspire greater awareness, inclusion, and connection across research, clinical practice, and community advocacy.

Tracey Johnston – Case Coordinator

Tracey brings over two decades of experience as a Teacher of the Deaf, specialising in early intervention for children with sensory impairments. She is dedicated to supporting families navigating uncharted waters following a new diagnosis, helping them access the NDIS, connect with knowledgeable clinicians, and build networks with other parents.

Tracey’s guidance reduces isolation, strengthens family capacity, and empowers parents to make informed decisions for their child’s health, development, and long-term well-being. Her expertise and compassionate approach make her an invaluable mentor and advocate within the UsherKids Australia community.

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.

Professor Lauren Ayton – Board Member

Associate Professor Kelley Graydon – Board Member