SUPER SUMMER

EDITION

  • Report on AGM
  • Giving Up Driving Feature Articles
  • International Research News

Merry Christmas and Best Wishes for 2014!

PP: 33 1088/00015

We are rapidly approaching the end of 2013 which has been another very busy year for the staff and volunteers at Retina Australia (Vic). We have continued to support our members, and potential members, through: peer support; participation in Telelinks, providing information, which has included the production of a new brochure, the regular distribution of this newsletter and raising funds for research.

RETINA AUSTRALIA (VIC) AWARDS

It gives me a great deal of pleasure to announce that thisyear the Board decided to initiate an annual Awards Program to recognise the significant contribution of individual members, and others, to the work of Retina Australia (Vic). These awards will be announced, and presented to the recipients, at the AGM each year.

As a consequence, Certificates of Appreciation were presented to:

  • Rick Clarke: in appreciation for his work as editor of “The Achiever” and as a Board member, member and volunteer of Retina Australia (Vic) for ten years; and
  • Dianne Ashworth: in appreciation for her contribution to research into retinal diseases and for being a member of Retina Australia (Vic) for more than twenty years. Rick Clarke accepting his award

As well, a Life Membership Certificate was presented to Graham Owen in appreciation for his service to Retina Australia (Vic) as a Treasurer, Board member, volunteer and member over many years. Graham is currently the Treasurer of Retina Australia (Vic) and has volunteered many hours of his time to keep the accounts in order. He regularly attends the office and assists on average two days each week, contributing to the general duties as well as the finances.

2013 ANNUAL GENERAL MEETING

Our guest speakers, Dr Lauren Ayton and Dr Dianne Ashworth,spoke about the Bionic Eye Project in which Lauren is the Clinical Research Co-ordinator and Dianne the first recipient of the Australian Bionic Eye. They explained the processes involved in this project and Dianne spoke about her personal involvement which included her account of the “implant process”, the subsequent weekly visits to the laboratory and the regular testing involved.

Dianne stated that she had volunteered to be involved because the implant was at the back of the eye and her retina would be protected. She was thrilled to be able to assist with this project and even more pleased that there had been so much success with it to date. She mentioned that she was looking forward to starting the next phase of testing which involved a semi-portable unit connected to a battery pack which would allow her to move and walk around in the laboratory and, at some future time, outside of it. Dianne carefully detailed that what she sees during the testing phase is different to normal eyesight, but it is the beginning of greater things to come.

Lauren then spoke about some of the other studies throughout the world, including the Second Sight Bionic Eye which is available in Europe and the USA. It was clear from her explanation that this Australian project is unique because of the positioning of the implant and the plans already in place to produce a bionic eye with 250 electrodes made with diamond materials. The current trial bionic eye has only 24 electrodes. Lauren also spoke about her team’s link with the Monash Vision Group research and the plans that this group has to commence clinical trials by the end of 2014.

I am indebted to Lauren and Dianne for giving up their Saturday afternoon to come and speak so eloquently to us and for spending significant time after the meeting answering people’s individual questions. Everyone felt extremely fortunate to be given the most up-to-date information about the Bionic Eye Project in very clear and understandable terms.

Telelink members meet in person at AGM

At the AGM, we also elected the office bearers and members of the Board who will serve for the next twelve months. Those elected are as follows:

PresidentLeighton Boyd

Vice-PresidentRick Clarke

TreasurerGraham Owen

SecretaryRosemary Boyd

Board MemberChris Edwards

Board MemberMary-Anne Carmody

I would like to thank these people for volunteering their time for another twelve months.

We currently have two vacancies on the Board and are seeking interested members who would be willing to assist us in the management of our organisation. The Board meets on average eight times per year. It would be good to share the workload by having a full complement of Board members. If you wish to find out more about what this role entails, please do not hesitate to phone me on 0417 566 899.

If any member would like a copy of the 2012-2013 Annual Report, which was distributed at the AGM, please contact the office.

50 YEARS OF OPHTHALMOLOGY AT THE UNIVERSITY OF MELBOURNE

On 21 November, Rosemary and I joined with Professor Stephen Smith, Dean of the Faculty of Medicine, Mr Peter Nankivell, chair of the Centre for Eye Research Australia, the Hon David Davis MLC, Minister for Health and Ageing, and many other distinguished guests at a reception to celebrate the achievements of 50 years of ophthalmology, research, teaching and training at the University of Melbourne. This was a grand occasion with speeches detailing the history and achievements of this faculty, and its staff members, which are highly regarded throughout the world.

RETINA AUSTRALIA NATIONAL ANNUAL GENERAL MEETING 2013

This AGM was held in Canberra on Sunday 8September 2013. The directors elected for the next twelve months are as follows:

RA (NSW) Betty Ghent; Liz Wheeler

RA (ACT) Jan James; John Barlow

RA (WA) Pina Faliti-Smith; Sean Smith

RA (Queensland) Anne Housego; Geoffrey Munck

RA (Victoria) Leighton Boyd (Vice-President); Rosemary Boyd(Secretary)

RA (SA) Philippa Cooper (Treasurer); Orm Cooper

Individual Member Graeme Banks (President)

At this meeting the Australian President, Graeme Banks, and each of the State Presidents, presented their reports which outlined what activities each organisation has been undertaking during the previous financial year. The audited financial reports were also presented and accepted. The general business discussed included:

  • a resolution submitted by Retina Australia (NSW) regarding intellectual property
  • a grant application to the Gates Foundation for the IRDR & DNA Bank
  • the Government submission relating to funding for the IRDR & DNA Bank
  • a proposal that we should consider hosting a Retina Australia led event in the Northern Territory, and
  • a decision that the 2014 AGM would be held in Perth

HUGH ROGERS FELLOWSHIP

I would like to congratulate Dr Lauren Ayton who was awarded the prestigious Hugh Rogers Fellowship from the Melbourne Boston Sister Cities Association at the end of October. The fellowship will allow Lauren to travel to Boston, US in February 2014 for a month, to work alongside Professor Joseph Rizzo, Professor of Ophthalmology, Harvard Medical School and Head of the Boston Retinal Implant Project. Together, they will lead an international joint task force to gain consensus as to the assessment and reporting of outcomes in vision restoration trials. This award recognises Lauren’s impressive national and international reputation for her work as the clinical coordinator of the Bionic Vision Australia project. We look forward to hearing about the results of this joint task force in the future.

OFFICE CLOSURE

As is our usual practice, the office will be closed during the Christmas, New Year and January holiday period. This allows our office staff and volunteers to have a well-earned break and enjoy time with their families. This year, our last day in the office will be Tuesday 17 December 2013 and we will reopen again on Tuesday 21 January 2014. During this time, I can be contacted on my mobile phone, 0417 566 899, and any mail, or messages left at the office will be attended to.

IN CONCLUSION

Thank you all very much for your continued support and assistance. I hope that you all have a wonderful Christmas and a happy New Year and are able to take the time to celebrate this special time with family and friends.

Las Vegas casino tycoon Steve Wynn,has given $25 million to support blindness research at the University of Iowa after becoming convinced that its scientists were leading the way in the search for a cure. Wynn, 71, said that university researchers were "knocking on the door" of a discovery that was unthinkable when he was diagnosed with a rare eye defect when he was in his 20s. He said there was no hope then for individuals inflicted with diseases such as retinitis pigmentosa, which has slowly compromised Wynn's vision and causes nighttime blindness and a lack of peripheral vision.

Today, he believes it ispossible that within his lifetime, scientists will be able to use stem cells to restore vision by growing new cells that are not defective and transplanting them into patient's eyes. He spoke with amazement as he described how Iowa researchers have learned how to grow the cells and are testing them on mice, some of whom have been implanted with Wynn's cells. "This is an exhilarating, quite exciting place. To a scientist, this is like going to a rock concert," Wynn, the chairman of Wynn Resorts Ltd., told The Associated Press. "I mean there is stuff going on in these rooms here that, to put it in the common vernacular is really far out."

Wynn spoke in an interview after hundreds gathered at the university for an event celebrating the Stephen A. Wynn Institute for Vision Research, which was renamed to honour the $25 million gift announced by Wynn in August. The money will help the institute build a new laboratory to grow stem cells, hire more scientists and accelerate studies already underway.

Wynn had few prior ties to Iowa, and Friday marked the first of what he said would be many visits to the campus. He credited his longtime business partner and director of his charitable foundation, Steven Dezii, with following research developments over the past 20 years and helping convince him that Iowa could make the best use of a sizeable donation.

He said the cutting-edge research makes his business pursuits feel mundane in comparison. "The rest of the world is waiting with bated breath for the kind of work you're doing," he said. "To help keep the lights on in this institute has now become synonymous with keeping the lights on in people's eyes."

Dezii said he was impressed that the university was seeking to develop both gene and stem cell therapies for patients when most laboratories focus on one or the other. He said the university's multidisciplinary approach, involving everyone from biologists to surgeons to engineers, was also groundbreaking.

Wynn, who has hotels and casinos that bear his name around the world, joked that, "Having your name on a sign is a cool thing." He later made clear that it was the university's idea to have the institute bear his name as a way to bring positive attention and motivate other donors.

Wynn noted that federal money for research has been tight in recent years and private donors are needed more than ever. He said he wasn't making the gift to help himself, saying he has been blessed with good care and a slow-progressing form of the disease. At the same time, he said he could see himself coming one day to have his photoreceptor cells replaced to restore his vision. "They've got my cells in the mice!" he said. "There's 100 mice here that had my retinal cells and they are running around." / Steve Wynn

Source: Ryan J Foley, Associated Press, 19 October 2013

I-Cane Mobilo

Dutch organisation I-Cane, has developed an intelligent cane called the I-Cane Mobilo, and will soon be available to buy. The I -Cane Mobilo expands the functionality of thetraditional white cane. In 2006, Monique de Wit developed this new concept for a cane for blind and partially sighted people as part of her graduation project for Industrial Design Engineering. In 2009, the cane won a prize for projects that have the potential to promote social interaction.

I-Cane Mobilo users can record personal routes to repeat these independently later. Simulaneously the product is able to detect height obstructions on the route. The unique and patented 'tactile arrow' provides the user with relevant information on route directions or obstacle warnings under the finger. The user feels a movement in the palm of his or her hand, indicating the direction they need to take in order to avoid obstacles or potholes. Thus the hearing senses remain free, as hearing plays an important role in orientation in traffic.

Blind and vision impaired people, their interest groups and rehabilitation organisations were closely involved in the creation process. What unifies these organisations is their mutual ambition to offer blind and partially sighted people an increased level of independence and thus individual freedom. The focus of I-Cane is to improve themobility and independence of vision impaired people with the aim of increasing their social participation in society.

Hanging Up the Car Keys

I was well aware 6 March 2013 was fast approaching – the date my licence expired and the date I had set myself to give up driving for good. Several years ago my optometrist warned that my visual field no longer met the requirements to hold a driver’s licence, but it was up to me to make my own choices and that client records were kept confidential. On my next check-up two years later when I confirmed I was still driving, his tone was quite different. His words, “You know you shouldn’t be”, have replayed over in my mind many times since. He went on to explain if I was involved in an accident and my eyesight was called into question, he could be called to give evidence in court regarding my current RP ‘status’.

This weighed heavily on my mind, yet still I kept driving. I thought I was managing my driving habits well by modifying and reducing the amount of driving I did. First by stopping driving at night, then moving close to work and a train station, to eventually driving only occasionally mainly to go shopping in the local area and to visit family and friends during the day. I’d observe the dangerous driving practices of other road users, and take heart in believing I was still a much safer driver than them.

One day, however, one of the contributors on the topic of driving in an on-line RPForum listed all the excuses people can make, including herself, to keep on driving when they no longer should be. I’m not sure what it was about this particular post, as I had read many other posts on this topic at other times, but it struck a chord and it dawned on me that she wasdescribing me to a T. I decided there and then on making the expiry of my current licence D-day for my driving career.

In the lead up to this date, being busy with organising the sale of my car and keeping up with my work and other activities, I had not given much thought to life without a car. As I drove the short distance to the dealer to finalise the sale, it occurred to me it was the last time I would ever drive. I shared this thought with the dealer and the reason why I was selling, however I could tell the significance of this fateful day was understandably lost on a busy trader with his mind on his next job. Looking back at my car with a small cheque in hand, on the walk to the train station my mind was full of the implications of the life adjustment I had just made.

As I look back all the tell-tale signs it was time to stop driving were there. When I was still driving at night, I was mindful I would clench the steering wheel tighter and travel much slower than other vehicles. Later on, I would become anxious about getting caught out driving home in the dark due to traffic jams and poor weather, which did happen a few times. During the day I would tend to compensate by being overcautious when giving way, much to the dismay of impatient drivers behind. Yet even so, a few times I still had a close call when to my mind another car suddenly appeared from nowhere.

Having now had a few months to adjust, the transition hasn’t been as difficult as I thought. I no longer carry the burden I felt each time I got behind the wheel. I had lost confidence driving and it was no longer enjoyable. Although it takes longer, I travel in a much more relaxed fashion and enjoy reading on the train.

Do I miss driving? Absolutely! As a farmer’s son, driving was considered an essential skill to learn early in our family. I remember my father teaching me to drive on the farm as a young teenager when I could barely see over the steering wheel or reach the pedals. I used to love driving, and feel fortunate to have many fond memories of enjoyable road trips over the past thirty years.

My first long drive by myself was soon after I got my licence, when I went to Newcastle to visit a friend from school during our first year at university. Trips since then have included several trips to Port Macquarie and Brisbane to stay with family over the Christmas holidays, and trips to Sydney, Adelaide, and a number of camping trips to places such as Merimbula, Tasmania and Kangaroo Island. /
Merimbula, 2007

Contributed by Rick Clarke, editor