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Six-figure private donation to fund eye research

26/09/2018By Matthew Woodley
The Save Sight Institute (SSI) has received a private donation of $300,000 to support keratoconus research.

Keratoconus sufferer Mr Larry Kornhauser, who has been supporting the SSI since 2014, made the donation. Kornhauser said he chose to donate to the SSI due to its commitment to improving patient outcomes and because the disease doesn’t receive enough attention or support for research.

“Many other researchers I have worked with in the past [seem to prioritise publishing] research papers…rather than…improving life for the people with keratoconus and their families,” Kornhauser wrote in an email to SSI.

“[Professor Stephanie Watson and my] journey together over the past four years has proved her commitment to connecting with and listening to patients and has given me the confidence that she will use the funds well. I can’t emphasise enough how supportive she has been to the association and the keratoconus community.”

“It gives us real-world data that we can use to inform patients on the likely outcome of their disease.”
Professor Stephanie Watson, SSI

The donation will be used to establish a new research position at the institute, which will analyse data from the SSI’s Kerataconus Registry, to help expand its reach both nationally and internationally. The registry itself was established in part with the help of an earlier $50,000 donation made by Kornhauser.

According to Watson, the registry is a crucial source of information for patients and clinicians, and will help determine hypotheses for future research.

“It gives us real-world data that we can use to inform patients on the likely outcome of their disease – what treatments they need and what the benefit is likely to be,” she said.

Kornhauser is also the president of Keratoconus Australia, and Watson said his insight as a patient and advocate for others with the disease had been important.

“His experience representing a larger group of patients through his work with Keratoconus Australia has been invaluable in terms of making sure the research is relevant to patients,” she said.

In other news, the SSI will host a KeraClub forum later this year designed to connect patients, researchers and clinicians. The event will be held on November 8 at the SSI in Sydney.

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