Hollie is a co-founder and Director of UsherKids Australia. She is a fierce advocate for early diagnosis of Usher syndrome through genetic testing, the education of clinical professionals as well as support for families around the country to share research and information about the current generation of USH kids.
Hollie divides her time between work at the Genetic Support Network of Australia, volunteering for UsherKids Australia, Paediatric Vision Impairment Alliance and is also on the Board at Genetic Cures Australia (www.geneticcures.com.au), a charity she established with her husband to further accelerate Australian research and therapies for genetic conditions such as Usher syndrome.
Emily Shepard is a co-founder and Director of UsherKids Australia. Emily is passionate and committed to making the lives of children with Usher syndrome and their families better. She has brought her perspective as a mother of a child with Usher syndrome, as well as skills from working in a commercial environment and combined them with her studies in Auslan and Public Health to successfully manage the not-for-profit organisation.
Emily divides her time between work, volunteering for various organisations including UsherKids Australia, Paediatric Vision Impairment Alliance, Deafblind International Usher Network and Deafblind Centre for Excellence, and is also currently undertaking a Postgraduate Diploma in Health Promotion online through Curtin University.
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.