The ophthalmologist sent me to Vision Australia for a second opinion and the social worker there recommended I go to a meeting for people with RP being held in St Kilda Road.

The aim was to set up a group to advocate for people with RP and raise money for research. Leonie co-opted me onto the committee, and I ended up as the Vice President. I didn’t see myself as someone who would be good on a committee as I am dyslexic and would be no good at taking notes etc, but I ended up there for many years.

Not having a young family of my own, I didn’t have the same vested interest as many of the others on the committee, who were thinking of their children’s futures in relation to the work of the organisation. I saw the awful guilt that was suffered by those whose children had the condition.

But you’ve got to be in it to win it! So I joined, and got a great deal out of meeting others with the same condition as me.

In those days we used to run fundraising dinners with auctions etc. and hosts like Rod Quantock.

We once won a $5,000 grant from Tattersalls and I remember going out to Chadstone Shopping Centre to be presented with it!

After a falling out in the committee, I became the President. Leighton Boyd was a member of the committee at that time too.