To celebrate Usher Syndrome Awareness Day, on 17th September 2016 UsherKids Australia hosted an afternoon of guest speakers at the The Royal Children’s Hospital, Melbourne.

The presentations are now available to purchase and view in your own time.  They provide our community the opportunity to gain insights from clinical guidelines for Usher syndrome, inspiring Usher stories from our ambassadors, as well as the progress of Australian Usher syndrome research.

90 Minutes

Our incredible lineup of speakers includes:

Mark Dunning – The Importance of an Usher Syndrome Community

Mark is the father of a teen daughter with Usher syndrome and Chairman of the Usher Syndrome Coalition in the USA who’s mission is to raise awareness and accelerate research for Usher syndrome. The Coalition also provides information and support to individuals and families affected by Usher syndrome globally.

Jonathan Goerlach – Going for Gold

Jonathan has Usher syndrome Type 2. After discovering a passion for paratriathlon, he’s also discovered a passion for winning. And with Tokyo 2020 Paralympics now firmly in his sights, he’s working hard to get there, one race at a time.  Jonathan is an Ambassador for Blind Sporting Council of Australia and Save Sight Institute.

Kate Morell – Dreams

Kate, a graphic designer and writer, also blogs for the Usher Syndrome Coalition. She has Usher syndrome Type 2. “I write to share my story. I fear my story will never be known, as I fear I will become invisible, the deafblind woman, and nothing more. Writing is my therapy. It is my companion. It is my friend.”

Lisa Kearns – Research update from the Centre for Eye Research Australia

Lisa is a Research Orthoptist and Genetic Counsellor and divides her time between the Centre for Eye Research Australia (CERA) and Royal Victorian Eye and Ear Hospital. Lisa brings us up to date with her work in the team investigating the translation of genetic eye research and speaks about the amazing research being undertaken by her colleagues at CERA.

Dr Rachel Burt – Congenital Deafness Study Update

Dr Burt is Group Leader of the Molecular Hearing Laboratory and a Senior Research Fellow at the Murdoch Children’s Research Institute. Dr Burt and her team are working on a Congenital Deafness Study, providing genomic sequencing to identified through the Victorian Infant Hearing Screening Program (VIHSP). This pilot program is being funded through the Melbourne Genomics Health Alliance.