KeraClub 2019: 4th Annual Keratoconus Event

The KeraClub links patients, researchers and clinicians on the topic of keratoconus.

KeraClub, a community event for patients with keratoconus and their friends and family was co-hosted by Save Sight Institute, The University of Sydney and Keratoconus Australia at the Sydney Eye Hospital on 24th October 2019. This annual event brought together over 40 patients with keratoconus, clinicians and researchers.

The event was chaired by Ms Michelle Urquhart, an internationally lauded violinist who has keratoconus. The speakers included Professor Stephanie Watson, Dr Jim Kokkinakis, and patients with keratoconus, Ms Joy Alleyne and Ms Ana Sandoval.

Ms Michelle Urquhart speaking at the KeraClub 2019

Ms Joy Alleyne kicked off the evening with a rendering of her personal experience with keratoconus. She recounted her shock when she was diagnosed in her youth, and the difficult, yet worthwhile adjustment to living with contact lenses. She wore piggyback lenses (hard contact lenses over soft contact lenses), which proved “hard at the beginning but the vision with contact lenses is so good, there is no other way to compare it. With contact lenses, you have hand-eye coordination, peripheral vision, and depth perception.” Additionally, she found wearing the lenses prevented her from rubbing her eyes. However, alongside their merits, the lenses came with a share of inconveniences: they were easy to lose, burdensome to clean, and finding an optometrist with experience in keratoconus management was a challenge. After sharing a wealth of experience with keratoconus and contact lenses, she advised, “Don’t let keratoconus define you, you decide what you are going to be. There are times when things are difficult. I once hailed a truck instead of a bus by accident! You just have to do what you can to get around”

Joy’s talk was followed by a presentation from Professor Stephanie Watson, the head of the Corneal Research group at the Save Sight Institute, a corneal surgeon and an innovator. Prof Watson detailed recent research, clinical care and current teaching activities conducted by her team at Save Sight Institute, an institute of The University of Sydney.

She acknowledged the contribution of Keratoconus Australia and its president Mr Larry Kornhauser as “a great source of support for keratoconus research and the KeraClub event since it started.”

Professor Stephanie Watson speaking at the KeraClub 2019

In presenting her research on keratoconus, Prof Watson showcased a recent finding from her team. They found that younger people and those with more advanced keratoconus have the greatest risk of changes in the steepest part of their cornea. Dr Alex Ferdi, a PhD student in Prof Watson’s research group, pointed to the importance of this work in helping clinicians decide who requires corneal cross-linking.

Prof Watson also reported on the progress the Save Sight Keratoconus Registry. This registry tracks outcomes of keratoconus using the real-world clinical data in over 2,600 patients. With sites in Australia, New Zealand and Europe, there is now data from over 23,000 patient visits. Clinicians receive benchmarking reports comparing the condition of their patients with other users of the registry. The registry system generates graphs ‘on the fly,’ which help monitor visual acuity, corneal shape and keratoconus treatments. Patients, too, benefit from the registry, as the graphs aptly illustrate their individual keratoconus journey.

Patient-reported outcomes are collected using the ‘Keratoconus Outcomes Research Questionnaire’ developed by Professor Konrad Pesudovs.  Dr Himal Kandel’s project found that this is a valid tool to measure the quality-of-life impact in keratoconus and the benefits of keratoconus treatment methods.

Prof Watson was pleased to announce the launch of the new “Optometry module” for the Save Sight Keratoconus Registry. This module developed with Dr Laura Downie, School of Optometry, The University of Melbourne, will track the continuity of care from ophthalmologists and optometrists for keratoconus patients, including contact lenses.

 “Improving outcomes of people with keratoconus can’t be done alone,” said Prof Watson. “Collaborations within Australia and abroad for basic science, clinical and translational research and collaborations with registry users and stakeholders including patients with keratoconus and Keratoconus Australia, are all needed to deliver research that matters.

The insightful talk from Prof Watson was followed by an informative presentation from Dr Jim Kokkinakis. Dr Kokkinakis has over 30 years of experience of managing keratoconus patients with various types of contact lenses. He is an optometrist at The Eye Practice, Sydney, and an adjunct senior lecturer at the School of Optometry and Vision Science at the University of New South Wales. “Managing contact lens in ‘extreme’ conditions’” was a key topic on this year’s event.


Dr Jim Kokkinakis speaking at the KeraClub 2019

Dr Kokkinakis highlighted that every keratoconus patient is unique: they have their own clinical profile, challenges, and expectations. He discussed common misconceptions, providing reassurance that people with keratoconus could do most things in contact lenses… aside from climbing Mt Everest! In addition to the broad range of capabilities, however, he underscored the risks of swimming or showering in contact lenses, rinsing contact lenses in tap water and sleeping in contact lenses.

Ms Michelle Urquhart shared her experience with scleral lenses. After undergoing corneal graft surgery, she now wears scleral lenses very comfortably.

It’s brightened up my life. I’m driving at night-time again; touring; playing music, reading all those tiny little dots on the page. I now feel I am a very fortunate person.” – Michelle Urquhart

The final speaker, Ms Ana Sandoval, flew from Melbourne to Sydney for the event to share her experiences and meet other people who have lived with keratoconus over different phases of their lives. She stressed the emotional toll of living with keratoconus, stating, “I knew absolutely no one with keratoconus… and it felt so lonely… When I wore my first contact lenses, I felt I was missing out on so much… the leaves, flowers and every little detail.”

Ana recently underwent cross-linking in both eyes. She affirmed that despite the pain and discomfort during the treatment, stabilising her keratoconus was worthwhile.

Panel Discussion at KeraClub 2019

The talks were followed by a panel discussion where participants actively engaged in discussions. The questions related to keratoconus risk factors, seeking appropriate services and managing keratoconus.

For the first time, the KeraClub was broadcast live this year making it accessible to the people who couldn’t physically attend the event. The approach allowed us to have participants from Australia and abroad. Please visit our SoundCloud page to find this year’s recordings.

Participants found the event advantageous, as it provided a forum to ‘interact with people with up-to-date information on the latest advancements in keratoconus treatments and research developments.”

Dr Himal Kandel, the Kornhauser Research Associate working at the Save Sight Keratoconus Registry, announced KeraClub as an established annual event, with next year’s session being held early in 2020.

Dr Himal Kandel and Dr Alex Ferdi provided support for the educational segment of the meeting. Save Sight Institute staff, Janet Bunn and Becky Lim were of invaluable help during the informal social gathering.

Next year, KeraClub will be in its 5th Year. To ensure you don’t miss our, click here to sign up for our newsletter now!

Audio Recordings

Community Information Day 2019

Our 7th Annual Community Information Day was a wonderful success! This year’s theme was ‘Succeed, Engage, Relate.’ As in previous years, the event targeted our community of young patients, their parents or carers, and teachers. We were delighted to welcome inspirational individuals such as Emeritus Professor Ron McCallum, Mia Armsworth, Connor McLeod, Brodie Smith, Dr James Smith and Jenna Jones alongside a host of specialists in the field, who demonstrated that vision loss and blindness need not hold you back from greatness.

Emeritus Professor Ron McCallum kicked off the day with a charismatic rendering of his life and experience with retrolental fibroplasia. Growing up before the advent of comprehensive disability services, he faced discrimination from an early age. Nevertheless, he excelled in his studies, attended law school, and became the first totally blind person appointed a full professorship at a university in Australia or New Zealand. Professor McCallum expressed gratitude for the assistance of his colleagues, students, and wife throughout his studies and early teaching career, and emphasised the limitless possibilities that now come with the era of technology.

Our Education Panel on ‘managing school transitions’ featured accomplished Goalball athlete Brodie Smith along with disability educators and advocates Susan Leong, Audrey Housbey, and Claire Mahony. Brodie, who has the degenerative eye disease Retinitis Pigmentosa, detailed her transitions through primary, secondary, and tertiary education, where she is now studying to become a high school teacher. She noted the benefits of having a support team at home and in school, where teachers accommodated her condition with a personal learning program that included enlarged fonts on her handouts, avoiding the use of green pens, and extending her exam completion time. These adjustments kept her in pace with the curriculum without alienating her from her peers. Though she identified this support network as the key factor for her successful transitions through different environments, she also emphasised independent resolve in prevailing over outside judgements or limitations based on her vision impairment. The specialists similarly underscored support networks and services, advising parents to enrol their children in mainstream preschool, and contact their principals and teachers early so the child is adequately familiarised with the school (and vice versa) before classes begin. Since its inception, NDIS has opened a range of services to students including functional assessments, vision mobility specialists, personalised learning plans, and state funded assistive technology that help students succeed in school and beyond.

Jenna Jones, a Paralympic swimming gold medallist, recounted her educational difficulties before being diagnosed with cone-rod dystrophy, and her methods of adapting thereafter. Teachers initially attributed her inability to complete projects to behavioural problems, and – as a kindergartener – Jenna could not accurately describe the issues she was experiencing. Upon learning of her vision impairment, Jenna refused to accept any social constraints. With the support of her gym teacher, she threw herself into sports and thrived. Her school modified her class schedule to better suit her condition, and friends assisted her during school and social outings. Still a competitive swimmer, Jenna is now also studying to become a masseuse.

Our Braille Panel discussed the value of learning braille in the era of technology. The panel featured Connor McLeod, who successfully campaigned for tactile Australian banknotes in 2016, and vision impairment specialists Vincent Nguyen, Sonali Marathe, and Harzita Hashim. While braille may appear anachronistic in the face of ever evolving technological services, the panel argued that braille serves as a foundation for skills that will be useful throughout life. The panel agreed that it is an invaluable medium for spoken language to those with vision impairment and offers a stronger sense of independence than that of technological reading devices. Learning braille at a young age teaches children spelling and sentence structure that will come into use throughout their schooling and into the workforce. Our panellists referenced the relief braille gave to their students or patients who experienced visual fatigue. They suggested sighted parents use dual reading material that include print and braille, so they may learn and read alongside their child.

Simran Goyal spoke on the effects of ‘becoming a yes woman’ as she transitioned from secondary school to university, and finally into the corporate world. High school proved challenging, as she struggled to find people her age to relate to during a time that was punctuated with change. However, she resolved to engage in a variety of activities including touch football (playing and coaching), the debate team, and leadership positions. Between her determination to try new things and the array of assistive technology available to her, she flourished. She found university remarkably inclusive; UNSW provided her with emailed lecture notes, in-class note-takers, and reformatted study spaces – all of which encouraged her to keep going. She’s now taking on the less equipped spaces of the professional world with her ‘yes woman’ attitude and has also launched into a new hobby of photography.

Mia Armsworth offered insight on her experience as an artist living with North Carolina Macular Dystrophy. As a child, she worried the condition would inhibit her ability to pursue a career in art. However, she came to realise that everyone sees things differently, and art became a medium to share her perspective with the world. Her piece, ‘How many fingers do I see?’ is featured in the 2019 ARTEXPRESS exhibition at the Art Gallery of NSW. She is currently attending her first year at RMIT University in Melbourne, enjoying the inclusive art scene, and adjusting to independent living (with relatively few fire alarm incidents).

All our speakers and panellists facilitated thoughtful discussions, which were enriched with the participation of 120 attendees from a variety of backgrounds. (We highly recommend listening to the audio on Save Sight’s SoundCloud!) The event highlighted the importance of community networking, with many of the parents and teachers requesting to maintain contact on a regular basis. As a result, our Patient Care Coordinator (made possible by the William and Eliza Hall Trust), Lorraine Villaret, is spearheading the creation of a social media group to serve as a forum for ongoing communication.

Helpful Links

Save Sight Institute

Carers NSW Australia

Cure Blindness Australia

Guide Dogs NSW/ACT

National Disability Insurance Scheme

Royal Institute for Deaf and Blind Children

Vision Australia

 

Audio Recordings

 

Community Information Day 2019

 

The Community Information Day programme includes:

  • Keynote Speaker: Emeritus Professor Ron McCallum
  • Talks from inspirational individuals
  • Panel discussions on transitions through education, and on literacy for children with visual impairment
  • Breakout sessions for parents/carers, teachers and young people

Date: 17 August 2019

Time: 9:00am – 5:00pm (Registration Tea and Coffee from 9am)

Location:
The University of Sydney Business School – CBD Campus
Level 16, Stockland Building (Access via Piccadilly Mall)
210 Pitt St
Sydney, NSW 2000

Registration is now closed: please email us at ssi.events@sydney.edu.au to join the waiting list or for other inquiries.

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

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.

Kera Club 2017 continues to support patients with Keratoconus

Following from the success of the inaugural Kera Club event in 2016, Kera Club continues to grow, with over 40 patients and their families meeting to hear the latest research and treatment options for keratoconus.

Fight Corneal Blindness! Chief Investigator, Professor Stephanie Watson led the evening, highlighting the Save Sight Registries Keratoconus Registry, which focuses on outcomes of treatment including corneal cross-linking.

Professor Stephanie Watson presents at Kera Club 2017
Professor Stephanie Watson presents at Kera Club 2017

Optometrists Margaret Lam and Mark Koszek, entertained attendees with their debate on “Small versus Large contact lenses: Which is better?” while providing valuable information on the treatment of keratoconus with contact lenses.

Margaret Lam shares her insight into small contract lenses for patients with keratoconus
Margaret Lam shares her insight into small contract lenses for patients with keratoconus
Mark Koszek speaks about large contact lenses for patients with keratoconus
Mark Koszek speaks about large contact lenses for patients with keratoconus

 

The evening concluded with a lively Q&A session, highlighting the engagement and knowledge of attendees about their keratoconus, its management and treatment options.

 

Q&A session

 

The annual Kera Club, co-founded with Keratoconus Australia, has become an important event on the FCB!’s calendar. The evening provides a unique opportunity for patients and their family and friends to meet and hear updates on research breakthroughs and treatment options. The evening also provides an opportunity to network and share their individual stories of success and difficulties in a safe and supportive environment.

 

Michelle Urquhart facilitates the evening.
Michelle Urquhart facilitates the evening.

 

Patients and their families can keep up to date with the latest resources and events on keratoconus by following us on Facebook.

Missed out on Kera Club 2017? You can watch a recording of the event:

 

 

Incredible gift means a cure is in sight

Original article

An anonymous donation will have an enormous impact

Most of us walk through life never having to think about the fact that we can see clearly. But for many Australians, loss of vision is a real problem – and it can be especially scary when it comes out of the blue.

Advanced macular disease is the leading cause of legal blindness and vision loss in Australia, affecting one in seven Australians over the age of 50. While there are some treatments available for certain types of macular disease, there are no treatments for dry macular disease, and currently no cure. But researchers at the University of Sydney’s Save Sight Institute are working to change this.

A generous donation of $100,000 to the Save Sight Institute will establish a scholarship for a PhD student to work with the Macular Research Group, directed by Professor Mark Gillies, who are on the frontline of research into new treatments for macular disease. The gift comes as the University celebrates its 24 hour giving day, Pave the Way.

“Advanced macular disease robs people of their central vision. They may lose much of their independence, be unable to read the numbers on buses or train platformsm, and they may not recognise their friends on the street,” says Professor Gillies.

Professor Mark Gillies examines a Patient at SSI Clinic
Professor Mark Gillies

 

Despite the urgency of research into these issues, all of the research undertaken by the Institute is reliant on grants and the generosity of donors and benefactors who believe in the cause.

This means that gifts like this one will have more than just a personal impact on the academic career of a deserving student – it will have a real and lasting impact on the research being conducted, and the lives that the research affects.

“The donation will support a PhD student working in our lab for three to four years, which would otherwise not have been possible”, says Professor Gillies. The PhD student will engage directly with the testing of new treatments, one of which involves testing compounds like curcumin, an active ingredient in tumeric, to see if they can boost the macula’s defences against oxidative stress.

Everyone working at the Save Sight Institute is passionate about this cause. When you consider this disease affects 1.5 million Australians, it becomes clear that research into this area is incredibly important, and people like this donor make all the difference.

How you can help

If you would like more infomation on how to support the Save Sight Institute, please contact the Planned Giving team on +61 2 8627 8824, or online at savesightinstitute.org.au