In recognition of World Cancer Day (4th February), we would like to highlight four initiatives of Save Sight Institute’s Associate Professor Max Conway and team.
World-first targeted therapy trial
The Australasian Ocular Melanoma Alliance (AOMA) in collaboration with Save Sight Institute is developing a world-first targeted therapy trial for patients undergoing enucleation for ocular melanoma. This “neoadjuvant” trial will involve administering a targeted therapy to patients in the hope that the drug therapy will shrink their melanomas and reveal a lot about the underlying biology of ocular melanoma.
Exciting new drug development and novel combined therapies to combat metastasis and primary ocular melanoma are being developed by SSI (A/Prof Michele Madigan) in collaboration with the Sydney Pharmacy School (A/Prof Fanfan Zhou) and Sydpath (Dr Svetlana Cherepanoff). Our team has identified combinations of drugs that are far more effective in killing melanoma cells than conventional therapies and have made groundbreaking discoveries regarding completely novel agents, which we hope to develop and bring into clinical practice soon.
Save Sight Registries Fight Tumour Blindness (FTB!) has developed a dedicated melanoma registry to track and audit ocular melanomas across NSW. In collaboration with AOMA, we are working towards world-first global ocular melanoma registry to track and audit ocular melanomas across Australia, the United States and Europe. The pioneering study will provide a basis for understanding and treating ocular melanomas well into the next decade and provide an unprecedented opportunity for global cooperation.
Multidisciplinary Ocular Oncology Team Meeting (MDT)
MDT is the first and only such multidisciplinary meeting in Australasia for ocular cancer; established and chaired by A/Prof Conway.
The team brings together specialists across the spectrum of cancer management and world’s best practice (including early entry into groundbreaking trials) to the benefit of ocular cancer patients and their families. The meeting utilises cutting edge molecular diagnostics (Dr Svetlana Cherepanoff/Dr Robyn Lukeis (Sydpath) and A/Prof Luke Heson and A/Prof Joshua (Kinghorn Cancer Centre and Garvan Institute of Medical Research) to provide cancer patients with an personalised molecular diagnosis; tailoring the drug and other treatments exactly to the molecular characteristics of the tumour. “MDT is considered the best practice in treatment planning for patients with cancer” (canceraustralia.gov.au), including reducing disparities in outcomes, improved clinical decision making, allowing access to molecular testing & targeted therapies where appropriate, ensuring appropriate follow-ups and adjuvant or neoadjuvant treatment. See more from our recent national meeting.
Save Sight Institute’s Professor Peter McCluskey has been awarded the AO – Officer in the general division of the Order of Australia for distinguished service to ophthalmology, and to medical education, to eye health organisations, and to the community.
Professor McCluskey’s impact on Ophthalmology in Australia and the Asia Pacific area is formidable and unmatched. He has a high-calibre career as a consultant eye surgeon and researcher. Impressive initiatives Peter has instigated during his career include the treatment of HIV patients, establishing an internationally renowned Inflammatory Eye Disease Unit at Sydney Eye Hospital; high quality eye clinics in south-west Sydney, Hobart and Darwin; creating a Masters of Medicine (Ophthalmology) and an International Masters of Ophthalmology, and the Sydney Eye Hospital Eye School.
The Save Sight Institute, of which Peter is Director, has an ever-increasing international reputation as a centre of research excellence and innovative thinking. With his devotion to his patients, education of current and future generations of ophthalmologists and his longstanding dedicated service to NSW public hospitals and the Royal Australian and New Zealand College of Ophthalmologists (RANZCO). Peter is a compassionate humanitarian who will have an everlasting impact on Australian Ophthalmology. Appointment as an Officer (AO) in the general division of the Order of Australia, highlights his accomplishments and encourages others to follow in his footsteps.
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 knewabsolutely 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!
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.
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 email@example.com 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.
The QBE Foundation has donated $10,000 to support a unique initiative by Sydney’s Save Sight Institute to assist children and teenagers with low vision or blindness. The “Making Connections” information day was attended by approximately 200 people, including teenagers with vision loss, their parents and teachers. Parents and carer’s of babies and young children with eye disease were also invited to attend.
The Save Sight Institute has released findings from a commissioned report into the socioeconomic impact of low vision and blindness from paediatric eye disease in Australia, highlighting the significant challenges faced by individuals and families affected by childhood blindness, and subsequent economic impacts more broadly