On any day, at any moment, Mr. Larry Kornhauser’s sight could fail. He could be driving. He could be out for a walk. “That’s the thing about keratoconus,” he says. “You can go from perfect vision to serious impairment in the flick of an eyelid.”
Mr. Kornhauser was 12 years old when he was diagnosed with keratoconus – an eye disorder that damages vision by distorting the shape of the cornea. When he is wearing contact lenses, his vision is good. But if something dislodges them – a speck of dust or a gust of wind, for instance – it leaves him struggling to see.
Keratoconus is thought to affect at least one in every 2000 people, though as screening techniques improve there are indications the number could be higher.
“It’s one of these niche diseases that doesn’t get enough attention or enough support for research,” says Mr. Kornhauser, who is president of Keratoconus Australia. “But it can affect a lot of people from a young age.”
Today, Mr. Kornhauser is donating a further $300,000 to support keratoconus research at the Save Sight Institute.
He has been donating to the Save Sight Institute since 2014. His first gift was a $50,000 donation in memory of his mother, Ms. Bettie Kornhauser, who took him to appointments with eye doctors when he was a child.
Mr. Kornhauser says in an email: “Just a word about why I chose SSI [Save Sight Instutute] and not another research body. 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.”
“[Prof Stephanie Watson and my] journey together over the past 4 years has proved her commitment to connecting with and listening to patients and has given me the confidence that [Prof Watson] will use the funds well. I can’t emphasise enough how supportive she has been to the Association and the keratoconus community.”
That gift helped establish the Save Sight Keratoconus Registry – the world’s first online database to collect information from patients and clinicians about the outcomes of keratoconus treatment. His latest gift – his largest yet – will establish a new research associate position at the institute. Once appointed, they will analyse the registry’s data and expand its reach nationally and internationally.
Professor Stephanie Watson of the Save Sight Institute says the registry is a crucial source of information for patients and clinicians. “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 says. “And it will provide us with hypotheses for future research.”
She is grateful for Mr. Kornhauser’s support, not only from a financial perspective, but because of his insight as a patient and advocate for others with the disease.
“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 says.
For Mr. Kornhauser, Professor Watson’s commitment has given him confidence that his gifts to the institute will improve patients’ lives. “Our journey together over the past four years has proved her commitment to connecting with and listening to patients,” he says.
“When you are supporting something that affects you personally, it’s an enriching experience, because you know the impact it will have on other people.”
Do you, or a loved one, live with Keratoconus?
You can learn more about Keratoconus in an upcoming KeraClub meeting held by the Save Sight Institute and endorsed by Keratoconus Australia. Its a forum to connect patients, researchers and clinicians. It is to be held on 8 November 2018 at the Save Sight Institute in Sydney’s CBD. You can register to attend by clicking this link.