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Usher Syndrome Network Conference - August 2019 Gold Coast

UsherKids Australia is pleased to be part of the Deafblind International Usher Syndrome Network Conference on 11th and 12th August 2019 on the Gold Coast, Australia. The extensive two day program includes speakers from all over the world, together with people from all areas of the Usher community covering medical research, psychology, employment, communication and social fields and is suitable for professionals, families and adults with Usher syndrome.  

Presentations include :

Hollie Feller – UsherKids Australia & Genetic Cures Australia "Helping Bridge the Gap Between Children and Adults with Usher Syndrome"

Professor John Griggs Head of Ophthalmology at The University of Sydney’s Save Sight Institute “Evaluating Biomarkers in Usher Syndrome: Identifying Outcome Measures for Trials”

Chloe Joyner Usher Kids UK (via video conference)  “Connecting Usher Kids in the UK”

Dr Tina Lamey  Australian Inherited Retinal Disease Registry and DNA Bank, Sir Charles Gairdner Hospitial- Centre for Ophthalmology and Visual Science, Faculty of Health and Medical Sciences, UWA “Usher Syndrome: Genetics, Personalised Medicine and the Australian Usher Project”

Dr Nicole Lo-A-Njoe-Kort “Research and Patient Collaboration”

Alana Roy Psychologist, Mental Health Social Worker, Counsellor and Advocate  & Dr Annmaree Watharow General Practitioner with Usher syndrome Type 2 “Better Practice in the Real World”

Emily Shepard  UsherKids Australia  “Helping Children with Usher Syndrome Thrive”

Moa Wahlqvist PhD Disability science, Researcher at the Audiological research centre, Örebro University hospital “Current Research and Previous Studies - The Importance of Interdisciplinary Studies in Health and Usher Syndrome”

Jennifer Weir Role Model as a professional working with Usher Syndrome Type 2 “Getting on with Life”

Christopher Woodfill Associate Executive Director Helen Keller National Center “The Five Pillars of Well-Being for Deafblind”

To register or to find out more, please go to https://event.icebergevents.com.au/dbi-2019/program

Improving the NDIS for participants who are Deafblind

Last month, Deafness Forum of Australia ran several workshops on Deafblindness and the NDIS. The Melbourne workshop included representatives from Deafblind Australia, UsherKids Australia, CHARGE Syndrome Association of Australia, and the Victorian Deaf Education Institute. 

The purpose of the workshops were to develop practical information for the NDIA that will improve the Scheme for eligible participants with deafblindness as part of the NDIS hearing stream participant pathway.

Pictured below are David Murray with guidedog Fiona (Deafblind Australia), Madelene Rich (CHARGE Syndrome Association of Australia), Liz Levesque (Victorian Deaf Education Institute), Margaret Dewberry (Audiology Australia), Meredith Prain (Able Australia), Emily Shepard (UsherKids Australia), Hollie Feller (UsherKids Australia) and Steve Williamson (Deafness Forum of Australia).

Run Melbourne for UsherKids Australia

On 28th July, Hollie Feller from UsherKids Australia will be running 5km in the RUN MELBOURNE to support UsherKids Australia.  Hollie and her daughter Alice are new to running, and after recently completing the Couch to 5K app are looking forward to this new challenge.

With your support, we can raise funds to keep Usherkids supporting families across Australia. 

You can donate via the link below. All donations over $2 will be tax deductible through the help of Genetic Cures Australia.

Click to Donate
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