IRD Patient and Family Day 2024 | Panel discussion

On 23 March 2024, the Inherited Retinal Disease Patient & Family Engagement Day was hosted in Sydney, Australia. This event was proudly co-hosted by UNSW Medicine & Health (Discipline of Paediatrics) and the Stem Cell Medicine Group at Children’s Medical Research Institute (CMRI). It was made possible by funding from the Medical Research Future Fund Stem Cell Mission (Chief Investigator: Associate Professor Anai Gonzalez-Cordero, CMRI), UNSW Medicine & Health, and Luminesce Alliance.
Presentation summary:
This live panel, was skillfully facilitated by ABC's disability affairs reporter, Nas Campanella, who also shared her experiences living with her vision loss. The panel discussion centered around the impacts of living with an IRD and reflections from the panel members around living well with an IRD.
Panel members:
• Dr Meredith Prain (Able Australia, University of Melbourne)
• Jenna Jones (Paralympian Swimmer; Instagram: / jennax0x )
• Junko Katsuda (mother of Arato)
• Arato Katsuda-Green (Zone Tennis Academy; Instagram: / arato.tennisjourney )
• Dr Ceecee Britten-Jones (University of Melbourne and Centre for Research Australia)
For more information about the event, contact UNSW at [e-mail].
0:00 Introduction
1:51 Audio description of panel
9:05 Experience of diagnosis
12:39 Improvement in diagnosis
19:45 Adaptation to vision loss
26:13 Adaptation at home
36:36 Invisible disability
43:35 Navigating relationships
53:55 Advice from panel members
1:01:08 Closing address