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Inherited Retinal Disease Patient and Family Day 2024

23 March 2024
9.00am – 4.00pm AEDT
Aerial UTS Function Centre

For who: Individuals living with an Inherited Retinal Disease, and their families

Starting at 9am, this event will include several expert speakers to provide an update on current research in the field of Inherited Retinal Diseases. During the catered lunch, guests will have the opportunity to speak to the clinicians and researchers, and visit the booths:

  • Retina Australia
  • Save Sight Institute
  • Paediatric Vision Impairment Alliance
  • UsherKids Australia 
  • Guide Dogs NSW
  • Children's Medical Research Institute
  • Halo and EyeSyght

After lunch, an exciting panel of individuals with lived experience will be facilitated by Nas Campanella.

Following the panel, guests will be able to stay on to participate in an optional focus group which aims to explore individuals perspectives of different treatment options. 

For event enquiries or to discuss your access requirements, please call Dr Eden Robertson on (02) 9348 0708 or email eden.robertson@unsw.edu.au.

This event is proudly hosted by UNSW Sydney (School of Clinical Medicine) and the Children's Medical Research Institute (Stem Cell Medicine group), and supported by:

  • Australian Government National Health and Medical Research Council
  • UNSW Medicine 
  • Luminesce Alliance 
Speakers
Photograph of John

Professor John Grigg

Invited speaker

Prof Grigg is a member of the Eye genetics research group Save Sight Institute, Children’s Medical Research Institute and Children’s Hospital Westmead. His main areas of research are in inherited retinal diseases, electrophysiology of the visual system, health economic impact of inherited retinal diseases and novel inherited retinal disease clinical trial endpoints.

Photograph of Anai

Dr Anai Gonzalez-Cordero

Invited speaker

Dr Gonzalez-Cordero is a leader in the field of stem cells and their differentiation into organoids with an emphasis on translational research to develop novel therapies for retinal genetic diseases. She is an Al & Val Rosenstrauss Fellow, a Group Leader and Senior Lecturer at Children’s Medical Research Institute (CMRI), The University of Sydney. At CMRI she heads the Stem Cell and Organoid Facility.

Photograph of Lauren

Associate Professor Lauren Ayton

Invited speaker

A/Prof Lauren Ayton is a clinical researcher from the University of Melbourne and the Centre for Eye Research Australia. She leads research teams in the fields of inherited retinal diseases, low vision, and gene therapy. A/Prof Ayton is also Director of Innovation and Enterprise for the Faculty of Medicine

Photograph of Alan

Dr Alan Ma

Invited speaker

Dr Alan Ma is a clinician researcher based at Sydney Children’s Hospitals Network – Westmead.  He specialises in clinical genetics and sees patients with genetic conditions and rare diseases in urban and rural NSW.  He has completed a PhD in the genomics of blinding eye conditions. 

Photograph of Robyn

Professor Robyn Jamieson

Invited speaker

Robyn Jamieson is Professor, Genomic Medicine, and Head, Eye Genetics Unit, Children's Medical Research Institute, Sydney Children's Hospitals Network and Save Sight Institute, University of Sydney. Research team investigates novel genetic variants and therapies: CRISPR editing and replacements in retinal organoids. Team led first clinical retinal gene therapy in Australia.

Photograph of Santiago and his guide dog, Trey

Santiago Velasquez Hurtado

MC and invited speaker

Santiago has been inspired by his vision impairment and electrical engineering expertise to invent solutions to make this world more inclusive. He founded two companies, EyeSyght and Hailo, to solve accessibility issues in transport, navigation, business, education, and employment. Santiago has won excellence awards, presented TED talks, keynote addresses, and shared his passion for innovative inventions during the Convention on the Rights of Persons with Disabilities at the United Nations in 2019 and 2020. He is a 26-year-old bilingual Australian who immigrated from Colombia and is the first blind electrical engineering student in the Southern hemisphere. Santiago does not believe that barriers should stop anyone from achieving their dreams. 

Photograph of Nas

Nas Campanella

Panel Chair

Nas Campanella is the ABC's disability affairs reporter. Nas started her career at the ABC as a cadet journalist in Sydney in 2011 before working as a regional reporter in Bega on the New South Wales far south coast. She then spent seven years working as a newsreader, reporter and senior producer for triple j and other ABC platforms. Nas has also undertaken projects with ABC International Development, running initiatives for people living with disability across the Pacific.

Photograph of Ceecee

Dr Ceecee Britten-Jones

Panel member

Dr Alexis "Ceecee" Britten-Jones (formerly Alexis Ceecee Zhang) is a clinician-researcher at the Department of Optometry and Vision Sciences and a Honorary Research Fellow at the Centre for Eye Research Australia. Her current research foci are investigating the genetic and phenotypic characteristics of inherited retinal diseases and developing outcome measures for gene therapy clinical trials.

Photograph of Meredith

Dr Meredith Prain

Panel member

Dr Meredith Prain is a Certified Practising Speech Pathologist, researcher and consultant with over 20-years’ experience working together with people with deafblindness to improve  interactions, awareness and services.

Meredith has a strong commitment to contributing to the evidence-base of best practice in working with people with deafblindness, and to sharing information about best-practice widely.

She recognises and values the importance of working developmentally with individuals and their social networks in order to achieve the best and most sustainable outcomes.

Meredith was diagnosed with Lebers Hereditary Optic Neuropathy when she was 17 and is legally blind.

 

Photograph of Jenna

Jenna Jones

Panel member

Jenna Jones is a 22 year old Australian Paralympic swimmer. She represented Australia at the 2016 Rio Paralympics. When she was in kindergarten, she was diagnosed with rod-cone dystrophy. She played a variety of sports, but as her eyesight deteriorated, she settled on swimming.

The second youngest of six children, Jenna is an excellent cook (her family owns a restaurant), is obsessed with dogs and describes herself as a Harry Potter nerd. Jenna finished her Higher School Certificate at TAFE before moving to the Sunshine Coast to train at the end of 2021.

Arato Katsuda

Junko and Arato Katsuda

Panel members

Arato is an 12-year-old who was diagnosed with a specific inherited retinal disease called Stargardt’s Disease when he was 10 years old. His father, Tim, also has this condition. Arato is a talented tennis player and was training several times a week prior to his diagnosis. He continues to play recreationally and play in low vision tennis competitions. Junko is Arato’s mother.