A gift for Keratoconus

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.

Community Information Day 2018

Registration is now closed.

If you have any questions

please call 02 9382 7272

Monday to Friday 8.30-4.30.

Information Day for young people living with low vision/blindness (and those who care for them).

Saturday 3 November 2018
9:30 am – 4 pm (registration Tea and Coffee from 9am)

University of Sydney Business School, CBD Campus, Level 17 Stockland Building, access via Piccadilly Mall, 210 Pitt St, Sydney CBD.

The Save Sight Institute is pleased to let you know that it will deliver its sixth Annual Information Day on Saturday 3 November 2018.

The Info Day is for young people living with low vision or blindness and those who care for them. The day is designed to meet the needs of teenagers or young adults and their parents/carers, as well as the parents/carers of young children. Teachers are also invited.

The day features a broad range of speakers to address topics of interest and relevance to young people with vision loss or an eye disease.

All day program, lunch provided. Gold coin donation requested to help us cover food

TIME

TITLE

SPEAKER

9:30amWelcomeMr Matt O’Kane
9:35amIntroducing SSI: Research, Patient Care & TeachingProfessor Stephanie Watson
9:50amKeynote Address Ms Jan McLeod

INSPIRE

10:20amMy life with sport: GoalballMs Brodie Smith
10:40amMy life with musicMs Lara Nakhle
11:00amBREAK

EMPOWER

11:30pmTechnology for people with low vision and blindnessMr Greg Alchin
12:10pmHorsing around with low visionMs Renee Godress
12:30pmMy storyMs Nicole Pedersen-McKinnon
1:00pmLUNCH

EDUCATE

2:00pmResearch at SSI: What’s New?Professor John Grigg – Paediatrics
Professor Robyn Jamieson – Genetics
Dr Alexander Ferdi – Keratoconus

BREAKOUT SESSIONS

2:45pmEMPOWER (Parents)
The journey to adulthood: parents sharing stories and tips.

Facilitated by Dr Ada McCluskey, psychologist and Professor Peter McCluskey, ophthalmologist.

EDUCATE (Teachers and service providers)
Ask a Doctor: Common Childhood Eye Diseases

Dr James Smith, Senior Staff Specialist Ophthalmologist at The Children’s Hospital at Westmead and Head of Department of Ophthalmology at Royal North Shore Hospital

INSPIRE (Young People)
Presentation and interactive session with Ms Vicki Papageorgopoulos, Community Development and Engagement Officer, Headspace
15:30Navigating the NDISMs Harzita Hashim – RIDBC
Ms Rebecca Kent – Vision Australia
Ms Kelly Prentice – Guide Dogs NSW/ACT
16:00Closing commentsProfessor Peter McCluskey
16:05AFTERNOON TEA
17:00CLOSE

Sydney CBD location
We will again deliver the day in a central Sydney CBD location, near to public transport and parking.

The event will be held at the University of Sydney School of Business CBD Campus. This is located in the Stockland Building, Level 17, accessed via the Piccadilly Shopping Centre, 210 Pitt Street, Sydney NSW 2000

Who should attend?

  • Teenagers, or young adults living with an eye condition with their parents
  • Parents and carers of children with an eye condition
  • Teachers and therapists of children and young people who live with an eye condition
  • Organisations that provide services to young people living with an eye condition.

Why attend?
The day is an opportunity for people to connect with each other, share experiences and get up-to-date information. The SSI team will provide an update on research developments, and will be available to answer questions. We also invite a range of service providers and subject matter experts to give attendees a “one stop shop” to find out what’s new in the sector, and to catch up with each other.

Places are limited
As a free event, places are limited. We aim to provide attendees with a valuable and enjoyable day, and so for catering and venue reasons, need to confirm numbers in advance. Please register if you would like to attend, and if you know of anyone else who would benefit from attending, please let them know ASAP so that they don’t miss out.