Last chance to register for the Usher Syndrome Pre-Conference Workshop on Wednesday 29th June, 2022 in Perth or virtually!
All sessions are being recorded and will be available to watch on demand for those that are unable to join on the day. The virtual registration is just $35 and is claimable through your NDIS funding.

Presentation: Usher syndrome gene therapies

Dr Tina Lamey, Senior Scientist and Research Fellow, Sir Charles Gairdner Hospital

Dr Lamey will provide a brief overview on gene therapy and associated pre-clinical and clinical therapies in the pipeline for Usher syndrome, followed by an update on their work in this space undertaken at the Australian Inherited Retinal Disease Registry & DNA Bank, Sir Charles Gairdner Hospital.

Presentation: Research Revelations by Fleur O’Hare, Senior Research Manager, Vision Optimisation Research Group at The University of Melbourne & Retinal Gene Therapy Unit at the Centre for Eye Research Australia (CERA), Royal Victorian Eye and Ear Hospital.

Ms O’Hare will present an update on the Nacuity Pharmaceuticals research trial currently being conducted in Australia for patients with Usher syndrome.  The world-first trial involves examining the safety and efficacy of an antioxidant, N-acetylcysteine-amide (NACA), in slowing the progression of retinitis pigmentosa. It is thought that NACA may protect retinal cells from oxidative stress and this will result in a slower decline in vision.

Presentation: Technology and Early Braille Solutions  

Peter Cracknell, Vision Technology Specialist at Quantum Reading Learning Vision

Mr Cracknell is passionate about supporting those living with vision impairment with practical solutions to communication.  He will provide a fun and interactive introduction to early braille learning for both adults and children with Usher syndrome.

Presentation: A Family Journey to Support Clinical Research

Bronwyn Doak, Parent of two young children with Usher syndrome

Ms Doak was devasted when her two young boys were diagnosed with Usher syndrome.  She will present the highs and lows of living with the genetic condition and how her family have overcome the barriers the condition presents. After investigating the clinical treatments available for her boys, she was disheartened to learn Western Australia lacked some of the specialist research equipment available in other states in Australia. She has since raised significant funds to ensure Western Australia is at the forefront of leading research into supporting those with Usher syndrome.

Presentation: The Pursuit of Positive Impact

Daniel Talko, young adult with Usher syndrome  

As a young man, Dan Talko was diagnosed with Usher Syndrome, a rare degenerative disease which effects the hearing & sight. Remarkably, coming to grips with sight loss gave him an innate desire to see it all. It encouraged internal reflection & personal growth ensued. The moments of humiliation & struggle, were essentially freeing. It presented the opportunity to live a full & meaningful life which Dan has embraced. He is now in pursuit of having a positive impact on others through coaching & in more recent times stand-up comedy.



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