When an email from the Office of the Governor-General landed in her inbox in March 2023, Dr Sandra Staffieri AO assumed it was a mistake.

But, as it turned out, the email was genuine, and in June, the CERA Research Fellow and Clinical Orthoptist was appointed an Officer of the Order of Australia for distinguished service ‘to medicine as an orthoptist and vision researcher, and to paediatric ophthalmology’.

“It was an incredible honour and surprise to receive the award,” Dr Staffieri says. “And like so many parts of my career, it was so unexpected.”

Now, with research and clinical focuses including hereditary eye disease and eye movement disorders, Dr Staffieri entered the field by default.

She missed out on her desired physiotherapy course in the 1980s, so instead started a Diploma of Orthoptics at the former Lincoln Institute in Melbourne.

“My grandfather was blind, so I had some interest in vision, but I planned to transfer to physio after a year,” she says. “However, I absolutely loved orthoptics and I had wonderful placements, including at The Royal Children’s Hospital (RCH).”

Dr Staffieri was offered a job before she even sat her final exams, and over the next few years she worked in private practice and, at the RCH, eventually becoming Chief Orthoptist.

In the mid-1990s, she began managing the paperwork for very young children who were being treated for retinoblastoma, a rare but potentially devastating cancer of the eye.

“My role started out as administrative, such as making sure the children were rebooked, but emotional and social connections quickly developed as I saw the children and their parents so often,” Dr Staffieri says.

“I sat with parents on one of the worst days of their lives, when they were told their child had cancer and would need multiple examinations, operations and treatment – or even need an eye removed.”

Retinoblastoma can be hereditary, so survivors’ children receive regular screenings from birth so that tumours are found early, and their eyes and vision can be saved.

However, children without a family history need somebody to notice the early signs.

Dr Staffieri’s early research showed that parents often experienced multiple delays before obtaining a referral, or they would completely miss the early signs such as a white pupil or a turned eye.

Despite hearing those stories, it was not until the inaugural One Retinoblastoma World Conference, in London in 2012, that the significance of delayed diagnoses hit home.

“I immediately wanted to change things when I returned to Melbourne,” she says. “I wanted to produce brochures and posters, but I was advised I would need robust evidence. The next thing I knew, I was doing a PhD.”

Greater impact

While maintaining her interest in retinoblastoma, Dr Staffieri is now turning to research at CERA into a type of mitochondrial disease called Leber hereditary optic neuropathy (LHON).

In late 2023, Dr Staffieri was the recipient of a Project Grant from the Mito Foundation to focus on the experiences of people with LHON, as well as the experiences of their families.

“The aim of this project is to give a voice to the LHON community by documenting their experiences,” Dr Staffieri says.

In the next year, she hopes the addition of AO to her name will give her a ‘bigger soapbox’ to promote eye health care in children.

“It has been quite the journey – and I haven’t finished by any means, so watch this space.”

This story was originally published in People in focus: Annual Review 2023.