The Newsletter of Retina New Zealand Inc
A Member of Retina International
Autumn Newsletter May 2006 No. 29
1 From the Editor
2 Letter to the Editor
3 From the President’s Desk
4 The Cost of Blindness in NZ
5 The Fred Hollows Foundation
7 Research - Intravitreal Avastin
8 Coping – Computer Hints
9 Creating an Accessible Environment
13 Book Review
15 List of Publications
To promote public awareness of retinal degenerative disorders
To provide information and support
And to foster research leading to treatment and an eventual cure
108B Comries Rd
Phone: 07 8533 612
Deadlines for articles for the winter, spring and summer issues are 31st July, 31st October and 31st January respectively
EMAIL COPIES: contact the National Secretary if you would like your newsletter emailed to you.
TAPE COPIES: contact the National Secretary if you require your newsletter on cassette tape and advise if you also require a print copy.
Retina New Zealand
PO Box 17 242
Telephone: 04 299 1801
Fax: 04 472 9490
Janet Palmer will be unavailable during July. Please direct any enquiries to Kaye Newton or Elizabeth East
Peer Support Coordinator
Telephone: 04 299 1801
Retina New Zealand Inc is grateful to the Royal New Zealand Foundation of the Blind for funding the printing of this newsletter
1 From the Editor
Blindness and vision impairment have costs that are not only financial but are unrecognized and unseen. The Foundation has recently released a report on the costs of blindness which I have reviewed on pages 5 and 6. The costs are shown to be individual and societal, I am sure you will be interested to read a summary of this report.
In February I received an invitation to attend a garden party to celebrate the 40th anniversary of the talking book studios at Awhina House in Auckland. A tour of the library and the recording studios was followed by a series of speeches and the presentation of the Narrator of the Year Award. The MC for the day was Wendy Petrie from the TV One news-reading team.
The biggest thrill for me was meeting Andrew Laing who narrated the book ‘A Strange Outcome’ which I have reviewed for this issue, and Rosemary Ronald who reads this newsletter onto tape. A demonstration of the new DAISY talking book player drew large crowds and completed what was a very interesting day.
Included with this newsletter is a survey form which includes questions about the newsletter, please fill this in and return it so Retina NZ can meet the needs of its members.
I hope you all enjoy this newsletter which examines the work of the Fred Hollows Foundation, has some interesting research articles, a profile of Fraser Alexander, and important notices. By the time you read this newsletter I will be attending my graduation at Massey University, something I am really looking forward to.
Ph: 07 8533 612
2 Letter to the Editor
I would like to send you a big thank you for your really worthwhile and interesting newsletter. The latest issue seems to be crammed full of interesting topics-the book service, traveling, depression, and driving. I have recently sent away for some leaflets on various topics. I also really enjoy your little snippets and quotes. Please keep up the fantastic work you are doing which I know can be tiresome and thankless. There are lots of us out here who really appreciate it.
3 From the President’s Desk
The executive members of Retina NZ Inc have just had a weekend planning meeting where our goals were set for the coming year. This is the only time we meet face to face apart from at the conference so it is an opportunity to get to know each other a little more as well as get heaps of work done.
Planning is also underway for our National AGM/Conference which will be held in Wellington this year on Saturday the 26th August. Please mark your diaries for this day if you live anywhere near Wellington or will be traveling through the area. The full details will be posted out to all members towards the end of July along with any remits and my annual report.
Our immediate task is to collect, collate and analyse the responses to the survey questionnaire which has been sent out with this newsletter. Members who receive the newsletter on tape will receive a print copy in the mail. If you have difficulty with filling this in, contact our peer support phone line 0800 233 833. Please take the time to fill this in. It is anonymous unless you wish to put your name on it. It helps our planning to know what our members want from us. Our members cover the full spectrum from fully sighted to blind. Sue Mellsopp our editor needs to know just who is reading the print newsletter, what you like to read, and if there are any issues with readability and font.
The questions about our peer support telephone service are an assurance check that you are happy with the way calls are answered and handled.
Some thinking is being done about the way the branches are structured and whether there are better ways to organize local groups. We also wish to redesign our website, this has been a long time coming. So it is important that we know what the end users want. That means you.
The executive are all volunteers but we will let you know what we learn in a future newsletter following collation of the results.
On our membership database form we will ask a couple of questions that were not listed previously. One is about age bands and another as to whether the member is a member of the Foundation of the Blind. Again, it helps us to know the composition of our members. Although you probably filled in a membership form when you first joined the society, if you haven’t filled one in for a year or two please fill one in next time you pay your subscription.
Phone: 03 3795 807
4 The Cost of Blindness in New Zealand
The Royal New Zealand Foundation of the Blind commissioned Gravitas Research and Strategy Ltd to conduct research into the direct, indirect, and opportunity costs of blindness in New Zealand. They found costs which included financial, time and non-quantifiable qualitative costs incurred by blind and vision impaired individuals. Societal costs are those incurred by society to provide services, treatment, equipment, benefits and other support required to mitigate the effects of vision impairment.
The research data was collected through a review of international and national literature, a review of secondary data sources, eleven in-depth informant interviews, four focus groups with RNZFB members, and a telephone survey of 200 members.
Recognising the individuality of many of the different costs, the study examines how the costs differ in relation to life stage, employment status, gender and location. The focus is on extra, non-optional costs incurred by individuals seeking to participate in society in the manner and extent to which they should be reasonably able to expect to.
The direct financial costs are shown to be substantial including the need to pay for assistance to undertake relatively minor domestic and household tasks, through to expenditure on adaptive equipment. These costs are shown to be varied and unavoidable. Further indirect costs included difficulties faced in purchasing cheaper grocery items, the need for housing in proximity to necessary amenities, and other services and supports which can be more expensive.
Substantial time costs are incurred. Additional time is spent undertaking domestic and personal tasks, travel, study and training. Extra time is spent planning, scheduling and marshalling resources. Time is lost when one is not able to do something immediately, or in waiting for necessary assistance. Time lost can also mean lost opportunities to undertake pleasurable activities and endeavours.
The cost of reduced flexibility, autonomy and spontaneity should not be underestimated. Many opportunities are forgone, often due to difficulties accessing information.
Survey respondents reported varying levels of financial and capital expenditure they credited directly to their blindness or vision impairment. The average cost of home help was calculated as being $75.24 a month, while extra time spent grocery shopping was calculated to be 42 minutes. Indirect financial costs included the restricted ability to take advantage of sales and specials. A more limited range of products were generally purchased.
Communication equipment had proved very costly, while others reported a communication cost as a lack of privacy when requiring others to read personal correspondence and do banking.
Travel costs impacted on many of the respondents. Taxi fares were too expensive, and the loss of travel independence was very significant, particularly the reliance on others. Family members reported high time and financial costs when being relied upon for transportation.
Students identified many challenges to reaching their academic potential. Access to certain subject areas was restricted, career potential reduced, and additional time was spent studying. Parents of vision impaired children reported significant time and financial cost ensuring their children could access the best possible education.
Vision impaired and blind adults have a higher rate of unemployment. Those employed also faced extra time in traveling costs, taxi expenses of over $60 per week, and special assistance within the workplace.
Health and medical costs were usually borne by the respondents, travel to ophthalmologists was reported as taking more than three hours by some rural people. Secondary medical costs related to vision impairment such as bumps, cuts and bruises reduced the quality of life.
Social costs were commonly identified as lost independence, reliance on family members, an inability to identify recreation opportunities, and reduced social contact with friends. The provision of welfare benefits is a societal cost of blindness along with employment support and disability support services.
The research concluded that the costs of blindness in New Zealand are wide ranging and significant. These costs are borne by individuals, their families, and society. Visual conditions generate a number of lost opportunity costs resulting in unrealized life potential in both economic and social areas.
This report can be obtained in full on the RNZFB website, it is also available on tape, in Braille and large print. To order a copy telephone the Foundation’s library on 0800 24 3333. A supplementary analysis of the costs of blindness in New Zealand by Jonathan Godfrey and Deborah Brunning is also available in the above formats.
5 The Fred Hollows Foundation
The Fred Hollows Foundation is an organization which seeks to eradicate avoidable blindness in developing countries, and to improve the health outcomes of indigenous Australians. The Foundation uses a sustainable development approach to achieve its objectives, its main role being as a catalyst and facilitator. The Foundation supports and implements programmes, monitors their progress, and evaluates their impact. A fundamental commitment to long term sustainability is very important.
The Foundation is inspired by the work and example of the late Professor Fred Hollows (1929-1993). Fred Hollows was born in New Zealand, did his medical school training here, and completed his post-graduate work in Wales. After moving to Australia he became the Associate Professor of Ophthalmology at the University of New South Wales. In the 1970’s he began work with the aboriginal communities, and was instrumental in establishing the Aboriginal Medical Services throughout Australia.
During the 1970’s Fred visited over 465 aboriginal communities, 62,000 patients were treated, 27,000 for trachoma, and 1000 operations were performed. In 1985 he began work as a consultant to the World Health Organisation and visited Nepal, Burma, Sri Lanka, India and Bangladesh on short term assignments. A growing disparity between the haves and have nots in eye health saw Fred Hollows make a decision to do something about it. The Fred Hollows Foundation was launched in Sydney in 1992, just five months before his death. Its guiding values include a belief that everyone has a right to sight and that indigenous Australians have a right to the same health outcomes as other Australians. It uses the best technical and organizational approaches to advance its goals, working with local partners to act as the catalyst for change.
Fred Hollows described intraocular lenses as the most expensive little bits of plastic in existence. To make them more accessible to people he raised the money to build IOL lens manufacturing laboratories in Kathmandu (Nepal) and in Asmara (Eritrea). Today the Fred Hollows IOL laboratories produce approximately 250,000 IOL’s per annum for 3.5% of the price of competitors.
Through skills development programmes and the development of new technologies sight has been restored to more than 1 million people worldwide. Today, 13 years on, the Fred Hollows Foundation’s vision is of a world where no one is needlessly blind, and it is still inspired by the vision of Fred Hollows himself.
The Foundation has commitments to project work in Eritrea, indigenous Australia and Vietnam. It has active development programmes in Bangladesh, Cambodia, China, East Timor, Eritrea, India, Kenya, Nepal, South Africa, Rwanda and a host of other countries including many of the islands of the South Pacific.
Fred Hollows received many awards in recognition of his tireless work to improve eye health worldwide. Among these are the Human Rights Medal, Humanist of the Year in 1991, an honorary doctorate from the University of Queensland, and the Rotary Award for World Understanding. The evening before his death he was presented with The Royal Australian College of Ophthalmologists Medal for his years of distinguished, meritorious and selfless service by fellow ophthalmologists.
There are many opportunities to support and volunteer to help the Fred Hollows Foundation. For more information on Fred Hollows, the Fred Hollows Foundation and their programmes to restore sight their website address is www.hollows.org
The Blind Chef
Jon, who has partial sight, has recently graduated from culinary school. He has launched his own mailing list called ‘The Blind Chef’ where he offers information on cooking skills and about the latest adaptive products. He has a database of frequently asked questions, tips, recipes and instructions for an entire menu each month. To subscribe to the mailing list send a message to: TheBlindChefemail@example.com
Be sure to reply to the confirmation email to complete the subscription process.
Recognising a Stroke
Sometimes symptoms of a stroke are difficult to identify. Doctors say bystanders can recognize a stroke by asking 3 simple questions:
1. Ask the individual to SMILE
2. Ask them to RAISE BOTH ARMS
3. Ask the person to SPEAK A SIMPLE SENTENCE
If they have trouble with any of these tasks call an ambulance immediately. Widespread use of this test could result in prompt diagnosis, treatment and prevent brain damage.
Quotes: ‘Happiness is good health and a bad memory’- Ingrid Bergman
Believers become achievers
By Dr Rachel Barnes
There has been a lot in the press recently about a new treatment for wet age related macular degeneration and other eye conditions involving the injection of Avastin (Bezacizumab) into the eye. Avastin was originally developed for use in colon cancer, and works by blocking the action of vascular endothelial growth factor (VEGF), a chemical messenger responsible for blood vessel growth and leakage. Blocking VEGF has been recognized for some time as potentially helpful in AMD and other conditions where abnormal vessel blood growth and leakage cause deterioration in vision.
However, Avastin is a large molecule and initial animal studies suggested that it would not penetrate to the level of the retina required for a therapeutic action in the eye. The company who developed it has therefore produced a smaller daughter molecule, Lucentis (Ranibizumab) for use in the eye. Clinical trials with Lucentis have been extremely encouraging, but it is not yet available commercially. In the meantime clinicians have been faced with many patients for whom the currently available treatments are unsuitable or ineffective. This dilemma led a few ophthalmologists in the United States to try injecting Avastin into the eyes of such patients. They have had very good results, at least in the short term, and following publication of their findings the treatment has rapidly gained in popularity.
There are some cautionary points that need to be made. Firstly, this drug was not initially developed to be used in this way and has not therefore undergone any formal research into its safety and effectiveness. For this reason, most doctors would not recommend it as a first-line treatment at this stage, but rather save it for use when conventional treatments have failed or are unsuitable. Secondly, we know that it has some unwanted effects when used in cancer patients as an intravenous medicine (injected into a patient’s bloodstream) such as increasing the risk of strokes and heart attacks. While this is very unlikely with the much smaller dose given into the eye, Avastin should be avoided in people with uncontrolled high blood pressure or recent history of a stroke or heart attack. Thirdly, this treatment has only been in use for the last few months, and it may have unforeseen late complications. Patients who may benefit from Avastin include those with active wet AMD, particularly those who can’t have photodynamic therapy, or for whom this has been ineffective. Patients with leakage from retinal blood vessels due to a blocked vein in the retina, or those with difficult to control diabetic eye disease may also benefit.
Key Genes for Sight Defect Found
Research has suggested that nearly three quarters of the cases of AMD are linked to just two genes. A team lead by New York’s Columbia University have published their work in the journal Nature Genetics, and hope their work will help aid in the development of new treatments.
Previous work had shown that several variants of a gene called Factor H significantly increased the risk of AMD. Factor H controls production of a protein that helps shut down the body’s immune response to infection once it has been successfully fought off. People with inherited variations of Factor H are less able to control inflammation caused by infectious triggers, which may spark AMD in later life.
The latest research focused not only on Factor H but on other genes that play a role in the same immune response pathway. A genetic analysis of 1300 people quickly identified a second gene, Factor B, as playing a significant role. While Factor H is an inhibitor of the immune response, Factor B is an activator.
Because of the complimentary role of these two genes, a protective Factor B variation can protect against AMD, even if one carries a risk increasing variant of Factor H, and vice versa. The researchers found 74% of the people with AMD had either the Factor H or Factor B risk factor, or both-but no protective variants of either gene. Lead researcher Dr Rando Allikmets believes these findings are significant because they confirm the role of these two genes and the central role of a specific immune response pathway in the development of AMD. The researchers are now looking for the specific triggers that set off the immune response and subsequent inflammation.
Lay Report to the S.A. & G.J. Ombler Charitable Trust
Summer Studentship Scholarship to Thomas Cheong
Title: Biochemical consequences of light exposure in RP rat models
Department of Optometry and Vision Science, University of Auckland
Supervisors: Professor Michael Kalloniatis and Dr Monica Acosta
Recent studies in animal models or retinal degeneration have shown that light exposure accelerates the rate of photoreceptor degeneration. The light exposure can be in the form of clinical photography. Given the significance of these findings, we wanted to evaluate the underlying mechanisms of photoreceptor degeneration in a transgenic model of retinitis pigmentosa: the Pro-23-His rat. This rat model has the human rhodopsin mutation and shows a progressive degeneration of photoreceptors.
We exposed control and Pro-23-His rats to continuous light for 24 hours and subsequently investigated retinal function in two ways. First we determined biochemical assays of key compounds associated with retinal metabolism. We have previously shown that certain compounds (enzymes) are sensitive markers of altered metabolic activity. In this way we can evaluate the metabolic characteristics of the retina and infer if the retina is under metabolic stress. Second, we conducted a study using an ‘ion channel probe-agmatine’ that we have previously shown to be an early indicator of cellular dysfunction. Photoreceptor cells label with agmatine before they die, and therefore identify cells that will eventually die. We found that metabolic activity is altered at the end of the 24 hour light exposure and that there is a significant increase in the number of photoreceptors labeled with the ‘ion channel probe’ in both control and the Pro-23-His rat model. The effect is greater in the animal model of retinitis pigmentosa. The anatomical and other markers are found a week or so after the light exposure. What this means is that in the animal model of retinal degeneration, photoreceptor cells are showing altered metabolic changes and poor control of ion channels before other changes are evident (eg anatomical). Although these findings confirm the damaging effects of light in normal retinas and in retinas of animal models of retinitis pigmentosa, they also provide evidence of the underlying mechanisms, i.e. altered metabolic demand. This finding will allow us to develop strategies to modify the effects of light by targeting metabolic pathways.
We greatly appreciate the S.A. & G.J. Ombler Trust in supporting Thomas Cheong during his summer studentship working within the Retinal Networks Laboratory of the Department of Optometry.
Michael Kalloniatis, Monica Acosta, Thomas Cheong.
Quote: We admire the Cheetah but we don’t suggest he try to improve his flying technique to be more like the falcon
You may feel a larger screen is all you need, but the features you need to consider when choosing a computer screen include: the type of screen, its size, accessibility of controls, image quality, resolution, and the effect of the screen on eye fatigue. Test these features on a monitor before you purchase it.
If you are short of space or need to move your monitor frequently, you could consider an LCD (liquid crystal display), although they are more expensive and are not available in larger sizes. They also appear to fade when looked at from an angle. They do reduce reflective glare, and help reduce the effects of eye fatigue. The actual viewing distance is smaller than the size of screen you purchase, most modern computers are supplied with a 17 inch monitor. If you use large print consider purchasing a 21 inch screen.
Some monitors have anti-reflection and anti-glare controls built in to their contrast and brightness settings. New flatter and squarer screens are easier on the eye and have less reflection. Resolution refers to the maximum number of pixels the monitor can display, and when the resolution increases the writing on the screen becomes smaller. The smaller the pixels the easier the screen will be on the eye. Remember that the best way to relieve eye fatigue is to take regular breaks.
To enlarge the font size on your emails if you use Outlook Express click on tools, then options, and compose. Click on the top of 2 buttons which say font settings and you can enlarge the font size to one which will suit you. You can also change the type of font and size for individual emails on the tool bar just above where you begin writing an email.
To enlarge the size of the text when reading web pages using internet explorer click on view at the top of the screen, then click on text size, and click largest.
Click on start, then all programmes, then accessories, then accessibility wizard. Using the next button to move to each section click the mouse or use the arrow keys to make your selections. Click on the blind or having difficulty seeing section and the accessibility wizard will move you through a variety of settings which will enable you to see your computer more easily. You can change icon size, colour, cursor type and size. You can use the back button to reverse your changes if you require.
9 Creating an Accessible Environment
Making a public or private environment comfortable and functional for individuals who are blind or visually impaired should be a part of universal design. This is particularly important to consider when designing new homes, senior centres and retirement communities.
In recreation and reading areas provide floor lamps and table lamps. People who are visually impaired should aim the light at the work they are doing, not their eyes. Place mirrors so light does not reflect off them and create glare. For window coverings use adjustable blinds, sheer curtains, or drapes that allow for the adjustment of natural light. Keep a chair near a window for reading and doing handcrafts in natural light.
Arrange furniture in small groupings so people can converse easily. Make sure there is adequate lighting near the furniture. When purchasing new furniture select upholstery with texture when possible. Texture provides tactile clues for identification. Use brightly coloured accessories such as vases and lamps to make furniture easier to locate. Avoid upholstery and floor covering with patterns. Stripes and checks can create confusion for people who are visually impaired.
Elimination of Hazards
Replace worn carpeting and floor covering. Tape down or remove large rugs. Remove electrical cords from internal pathways or tape down for safety. Use non-skid non-glare products to clean and polish floors. Keep desk and table chairs pushed in. Move large pieces of furniture out of the main traffic areas. Resite telephones that are in main traffic areas. Keep cabinet, cupboard and room doors fully open or fully closed-not half open. Windows should be either open or shut, not just pulled to.
Use of Colour Contrast
Place light objects against a dark background, for example a dark table near a white wall, or a black light switch plate on a white wall. Install doorknobs that contrast in colour with doors for easy location. Paint the woodwork of the door frame a contrasting colour to make the door easier to locate. Mark the edges of all steps and ramps with paint, tape or velcro of a highly contrasting colour.
Hallways and Stairways
In hallways make sure that lighting is uniform throughout. Keep one wall free of furniture so people can trail that wall without encountering obstacles. Light stairways clearly, and make sure railings extend beyond the bottom and top steps. Mark landings in a highly contrasting colour with paint, tape or velcro.
This information was sourced from the American Foundation for the Blind at www.afb.org
The Tiresias website is an information resource for people who work in the field of disabilities, and anyone with an interest in disability, particularly visual impairment. It evolved from work done by Dr Janet Silver of Moorfields Hospital and Dr John Gill of the Royal National Institute of the Blind.
Current information listed online includes lists of devices and types of equipment available from a wide range of international companies, ongoing research and development, agencies serving the blind and vision impaired, and guidelines on accessibility. A search engine allows you to search for a specific word or exact phrases.
Over 1600 devices for the use of blind and vision impaired people are listed under headings such as daily living, educational, low vision and orientation and mobility. Suppliers and the current cost of the device are included. There is a list of devices specifically for the deafblind.
The technology section lists up to date information and communication technology available for purchase such as magnification tools and screen readers. Entries have picture links or illustrations of the device.
Tiresias provides recent non-medical research into assistive technology for the blind and vision impaired. Subjects covered range from access to information and inclusive design to spatial awareness and visual displays. Over 100 scientific and technological reports on a wide range of topics from smart cards to interactive digital television can be accessed on the website as well as a variety of other journals and publications.
Recently I stood at a bus stop only to have 3 buses I could have caught drive past. Two which did stop were going to the wrong suburb. Finally a bus with a driver I knew stopped and he rang the office to tell them I had been left behind. Wait here I was told. 20 minutes later another bus arrived, one that had seen better days, sent especially to take me home! Chocolat and I felt like royalty, but unfortunately the driver did not know the bus route, so I had to direct him and was able to be dropped off outside my own home!!
Why would a blind person want to run 42 kilometers, and why would someone want to be on the other end of the guiding rope? Having been diagnosed with a degenerative eye condition called Choroideremia in my teens, I played rugby and cricket until my sight loss meant I had to pursue a sport requiring less visual acuity. Running a marathon had been a goal of mine after friends suggested the hills of the Rotorua marathon would be too tough for me to endure. In 1988 I set about proving every one of them wrong. My time of 4.07 and the decrepit state of my body at the finish line saw my idea of running just one marathon go out the window as I decided I could go under 4 hours without stopping. The more running I did the stronger I felt both physically and mentally.
Since 1999 I have required a sighted guide to compete. It was through the networks of the RNZFB that I was introduced to sighted running guides. These vital volunteers use a tether of varying length to ensure my position on the road is safe, and they give me the information I need on the terrain, speed or refreshment stops. This was a very exciting new lease of life as I didn’t want to give up the sport I loved but had realized that my sight was insufficient to independently complete a marathon course safely. Running on a rope can bring some interesting reactions to being labeled as a cheat, to can I have a go next. Among the plethora of comments a memorable few are: are you two tying the knot, how did he rope you into doing something as stupid as a marathon, getting the hang of it yet, who’s the puller and who’s the tugger then.
The Achilles Track Club of New Zealand is an organization catering for all people with physical and sensory disabilities who wish to compete in mainstream endurance events. They have been my inspiration and source of volunteers for 7 years now and their support both on and off the road has been simply wonderful. I have been guided by many selfless and inspiring people from firemen to air traffic controllers, from world champion athletes to first time marathoners, spanning in age from 14 to 72.
People close to me have told me I am addicted to distance running. I have completed several marathons including London, New York and the Gold Coast. Running marathons led me to the realization that a sight loss is no barrier to pursuing one’s dreams. In the years leading up to my significant sight loss a number of aspirations I had seemed doomed to end in frustration. I wanted to study marketing, advertising and commercial law. I wondered about the difficulties of listening to hours of recorded lecture tapes, finding and dealing with volunteer note takers, and the whole process of sitting oral rather than written exams. What I really required was none of these things, I required the right attitude to seek and grasp the opportunity. Therefore in more recent times my spare time has been consumed pursuing a post-graduate degree.
When the RNZFB introduced me to blindness technology and transcription services I not only realized I would have access to study materials, but that the access was almost completely independent and as efficient as fellow sighted students. I discovered a world where I could read my handouts in lectures, participate fully in class exercises, where I could give oral presentations, and I had the necessary resources and technologies to complete assignments in an identical manner to my sighted peers. This opportunity the RNZFB created for me was an incredibly liberating feeling; accessing the internet, using academic databases, downloading pdf files of scholarly journal full text articles, and participating in on-line seminars were all every day requirements of a Master of Business student, and I was there doing it. Of course there are the interesting and amusing moments such as when a lecturer is pointing to words on the board to answer or ask questions saying ‘this one’, and when a lecturer prints off an email and in handing you the hard copy says ‘now there you go, you can scan this now and voila, you will have an electronic copy’. You turn to them and say ‘what was it 30 seconds ago then!’. Sometimes we expect more from the university intelligentsia, and wonder whether MBA stands for mind boggling arrogand or major bullshit artist.
In one amusing incident we were asked to critique the oral presentations of our colleagues. After submitting our assessments the lecturer quizzed me for giving a student 8.5 out of 10 when the rest of the class gave around 4. The student concerned was not looking at the screen as he flicked through his powerpoint slides, each screen was talking about the notes he had just read out. It was totally confusing to the sighted students but sounded perfect to me!
Fraser is the Auckland Branch Chairman and International Delegate of Retina NZ
Lynn, Chairman of the Otago/Southland Branch, recently won a gold medal in the 20km recreational bike race at the Masters Games. Riding a tandem bike with a pilot, Lynn says her fitness has increased tremendously since getting her guide dog Namo.
13 Book Review
A Strange Outcome: The Remarkable Survival Story of a Polish Child by John Roy-Wojciechowski and Allan Parker. Penguin Books, 2004. TB 7314
This is the best talking book I have ever listened to. It is the truly remarkable story of Jan Wojciechowski (voy-ch-hoss-key), one of the Polish refugee children who came to New Zealand in 1944 and went to live in Pahiatua. Jan was about six in 1939 when Hitler invaded Poland, and less than three weeks later Stalin’s armies invaded from the East. One night in February 1940 Jan’s family and nearly a quarter of a million people in Eastern Poland were given 15 minutes to collect their belongings, and were put on convoys to slave labour camps in Siberia and the Arctic Circle. Jan was exempted from physical labour and can remember little about the camps, but by the end of the second winter half of those who had arrived on the cattle trains had died.
There has been little acknowledgement of one of the greatest enforced migrations in history. After 18 months in the Gulag the Poles were allowed to leave, trekking through the Arctic winter to Central Asia. By the time they reached Bukhara in Uzbekistan one brother had been left behind on the train journey and Jan’s mother was terminally ill with tuberculosis. The remaining children were evacuated to Persia where their health returned, and then they were evacuated to New Zealand.
Jan learnt English, went to boarding school and university in New Zealand, and became a well known and successful accountant and businessman, eventually becoming the founder of Mainzeal. He changed his name to John Roy by opening a phone book and choosing the shortest possible name.
The ordinary achievements of a lifetime, career and the establishment of a new family took on an enormous significance. Since the 1980’s Jan has made several trips back to Poland to find a long lost brother, and a sister who married and lives in Iran. Unbelievably the five children all survived the war, a fact they attribute to their mother who fought to make sure they survived. Jan believes much of his financial success derives from the genetic heritage of his father who had been shot in the early days of the Russian invasion.
Jan Wojciechowski lives in Auckland and is the Honorary Polish Consul for New Zealand.
Retina NZ Inc National AGM and Conference
Our annual AGM/Conference is to be held at the Foundation premises, 121 Adelaide Rd, Newton, Wellington on Saturday the 26th of August. There will be an exciting varied programme, please mark your diary now.
Retina Australia is holding its biennial conference from the 22nd to 24th September 2006 in Canberra. They are excited to have Dr Gerald Chader as a guest speaker. He directs research on retinal diseases in the US with a focus on sight restoration. For further details check their website www.retinaaustralia.com.au
Wellington Branch Annual General Meeting
This will be held at the Foundation’s Wellington premises, 121 Adelaide Rd at 11am on Saturday the 20th May. Rapheal Hilbron from Vodafone will be speaking about their corporate relationship with the blind and vision impaired and demonstrating a phone suitable for those who can still read print.
Your subscription is now due for the 2006-2007 year. Please remember that the subscriptions are now $20 per annum for waged or $10 per annum for unwaged people.
There are still 4 pairs of Rio cotton blend men’s socks (size 6-10) and 10 pairs of men’s socks (size 11-13) available to members courtesy of Rio. In addition Bonds have donated 6 pairs of ladies cotton blend socks, trainer style with coloured tops (size 3-8). If you would like a pair of these socks please contact Elizabeth East, telephone 04 299 1801 or by email at firstname.lastname@example.org You will need to indicate what size you want and provide your postal address.
I have been supplied with the details of a New Zealand company from which individuals can order talking books. You will need to fill in an application to enable you to access their catalogues and databases. The Library Supply Company can be contacted at:
Phone: 09 360 6930
0800 20 2060
Fax: 09 360 6940
Mail: P O Box 8137 Symonds St,
15 List of Publications
“A Family Affair”- A New Zealand Guide to Inherited Retinal Degenerations. Re-published in September 2000, 32 pages.
“About Macular Degeneration”- A New Zealand Guide to Macular Degeneration. Published in 2001, 32 pages.
Members will receive relevant booklet when joining Retina NZ. Extra copies can be ordered at $5.00 each from National Office.
Free Brochures Available from National Office
Coping with some sight loss or a degenerative retinal condition
Supporting people with retinal degenerative disorders
Detached Retina-a matter of urgency
Take the Amsler Test-a self testing card for early detection
of macular degeneration
Members can obtain these brochures free from the National Secretary, Retina NZ Inc, PO Box 17-242, Karori, Wellington or by emailing her at email@example.com and requesting the ones you require. A charge of $5 is made to non-members to cover printing and postage.
Annual membership subscriptions are due on the 1st of April each year. Subscriptions are $10 for unwaged people and $20 for waged. Any person interested in receiving this newsletter is welcome to subscribe. Donations of $5 and over are tax deductible.
DO YOU NEED HELP OR ADVICE?
The Retina NZ Peer Support programme is a free and confidential service operating nationwide. To make contact with one of Retina NZ’s peer supporters telephone 0800 233 833. All calls are treated in strictest confidence.
Ring any of the following free-phone numbers if you want to speak to a geneticist or genetic counselor about your own diagnosis of RP, Macular Degeneration or other retinal degenerative disorders.
Auckland Genetic Hotline (Northern Regional Genetic Service)
0800 476 123
Wellington Genetic Hotline 0508 364 436
Christchurch Genetic Hotline 0508 364 436