• April 3, 2024

The first-ever Inherited Retinal Disease Patient and Family Day a resounding success

Image L-R: Professor Robyn Jamieson, Arato, Nas Campanella, Jenna Jones

Luminesce Alliance was delighted to attend the first-ever Inherited Retinal Disease Patient and Family Day on 24 March 2024. The day was a resounding success, attracting more than 120 participants from NSW, Victoria, South Australia, Queensland and New Zealand.

The day provided an opportunity for patients and families to share their experiences, hear the latest research and learn about the path from diagnosis to treatment, and to connect with others with lived experience.

It was especially valuable to hear the lived experience of our panel including ABC journalist Nas Campanella, Paralympian Jenna Jones and Jeans for Genes ambassador Arato.

Professor Robyn Jamieson and A/Prof Anai Gonzalez Cordero talked about their work in eye genetics and stem cell medicine before engineer Santiago Velasquez from EyeSyght talked about using technology to improve accessibility.

“The interaction with patients is tremendously beneficial to our researchers. This has been great for them to understand the impact that their work can have in real life,’’ A/Prof Gonzalez Cordero said.

The day ended with discussion on living with vision impairment. Paralympic swimmer Jenna Jones encouraged parents to make their children more independent.

“Just because I have support doesn’t mean I’m not living an independent life. It’s important to teach your kids to advocate for themselves and ask friends for help,’’ she said.

The day was hosted by the Behavioural Sciences Unit at UNSW and the Stem Cell Medicine group at the Children’s Medical Research Institute, with the support of Medical Research Future Fund (Australian Government Department of Health and Aged Care), UNSW Medicine and Health and Luminesce Alliance.

Video Resources:

Welcome Address from the Hon Mark Butler MP

An introduction to Inherited Eye Diseases

Current and future diagnosis and management of Inherited Eye Diseases

An introduction to advance therapies for Inherited Eye Disease

Recreating the disease in the lab

Gene therapy: a Luxturna implementation example

How far can you go …in the shoes of a blind man?

Panel discussion

Playlist of all videos