Usher Syndrome Pre-Conference

WEDNESDAY 29TH JUNE, 2022

Registration

There are two registration options. You can register to attend just the Usher Pre-Conference Session or in addition to a full conference registration. Please note the Usher Pre-Conference Session at our Melbourne Hub has now been cancelled. Delegates are welcome to purchase a virtual registration in lieu of a Melbourne Hub ticket.

 

Option 1: In person - Perth

Time: 9am – 3pm (AWST)

Location: Esplanade Hotel Fremantle by Ridges, Western Australia

Cost (including morning tea and lunch)

 

 

REGISTER NOW - PERTH IN-PERSON

 

Option 2: Online

The conference will also be live streamed for those unable to attend in person. The presentations will be recorded and you can watch them in your own time.

Time: 10:30am – 4:30pm (ACST), 11am – 5pm (AEST), 1pm – 7pm (NZST)

Location: Online

Cost: $35

 

REGISTER NOW - ONLINE REGISTRATION

 

Usher Syndrome Pre-Conference Program 

 

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

Title: Usher syndrome gene therapies

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.

 

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

Title: Research Revelations

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.

 

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. 

 

Bronwyn Doak, Parent of two young children with Usher Syndrome

Title: A Family Journey to Support Clinical Research

Ms Doak was devastated 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. 

 

Daniel Talko, Young adult with Usher syndrome

Title: The Pursuit of Positive Impact

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.  

The program has been prepared by Emily Shepard. For all enquiries, please email [email protected]