People travelled from all over Australia and New Zealand to attend an Inherited Retinal Disease Patient and Family Engagement Day in Sydney over the weekend, to learn about the journey from diagnosis to treatment, the latest research into eye conditions and the lived experience of high-profile people from ABC journalist Nas Campanella to Paralympian Jenna Jones.

The event, attended by more than 120 people, was held at UTS, and co-hosted by CMRI’s Stem Cell Medicine Group and UNSW Medicine and Health (Disciple of Paediatrics). It was made possible by funding from the Medical Research Future Fund Stem Cell Mission, UNSW Medicine and Health as well as Luminesce Alliance.

Speakers included Professor John Grigg from Save Sight Institute, Dr Alan Ma from the Children’s Hospital Westmead and Associate Professor Lauren Ayton from the University of Melbourne talking about diagnosis and advanced therapies.

Professor Robyn Jamieson and Associate Professor Anai Gonzalez Cordero from Children’s Medical Research Institute 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,’’ Associate Professor Gonzalez Cordero said.

The day ended with a panel of people discussing living with vision impairment. Paralympic swimmer and Jeans for Genes ambassador, Jenna Jones, encouraged parents in the room to make their children more independent.

“Just because I have support doesn’t mean I’m not living an independent life.

“It’s really important to teach your children to advocate for themselves and ask their friends for help. It can be hard going through school, comparing yourself to others, but at some point you have to accept your situation and ask for help.’’

Fellow Jeans for Genes ambassador, Arato, who plays international tennis, encouraged other children to pursue their dreams regardless of their diagnosis.

“If you have something you’re passionate about, never stop trying to make it a reality.”