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

 

Photo Gallery

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

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.