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NOVEMBER 2003, Number 19
It's supposed to be Spring but here in Dunedin it could be any of the four seasons, sometimes all of them in one day! Spring started out wonderfully sunny and warm for a few days and the flowers got the message and began to bloom profusely in my garden. But since then there have been freezing, cloudy, windy, hot and wet days with tropical rainstorms, all mixed up together, to the point that Dunedin gardens have never looked better when dressed florally for Spring.
This should remind us all that summer is just about here and it is time to take particular care of your eyes and skin. This year the ozone hole is the biggest ever and when it breaks up soon the risk of eye damage and skin cancer from UV light is the greatest yet. So, make sure you wear a wide brimmed hat or cap as well as wrap around sunglasses, coloured to suit your particular eye disorder, every time you go outside. The glare comes to you not only from the sun but also reflections from concrete pavements, sandy beaches, the sea and even snow on the mountains. There is a new, more accurate international index, the UV Index, developed by the World Health Organisation (WHO, which replaces the "burn time" index, to measure the UV light, on the TV weather forecast to take note of this year.
Last month I was fortunate to be given a ticket to attend the UNESCO Science Lecture celebrating the 50th anniversary of the discovery of the structure of DNA, featured in a Talking Book Review of "The Seven Daughters of Eve" by best selling author Bryan Sykes in Newsletter No. 16. This fascinating lecture, given by Professor Bryan Sykes from Oxford University was titled "I met a Traveller from an Antique Land": Genetics as history. This was followed by a ceremony to present the Rutherford Medal for Science to Emeritus Professor George Petersen of Otago University, "The father of DNA in NZ, also featured in my editorial in the same issue.
As this is the last edition before Christmas and the holiday season, we have a varied issue for you to browse through. We always welcome letters and articles from new contributors. So on behalf of Janet Palmer and myself, we wish you all a very happy holiday season. We'll be back next year!
June Ombler, Editor
207 Forbury Road, St Clair, Dunedin
Phone: 03 455 8813. Email: email@example.com
FROM THE PRESIDENT'S DESK
By Kaye Newton, Sunday 9 November 2003
Welcome to my first report as President. Fortunately for us, a change in leadership does not involve reshuffling like a political party. There has been little change in the Executive membership, but we gladly welcome Camille Guy from Auckland to our ranks as Vice President. Our executive comprises, Kaye Newton, President; Camille Guy, Vice President; Tony Haas, Immediate Past President; Elizabeth East, National Peer Support Co ordinator; Kaye Clark, Policy Secretary; Fraser Alexander,
International Delegate, Allan Jones and Lynn Keogh who has taken on updating the website. June Ombler is editor of the newsletter and Janet Palmer handles our communications and subscriptions as National Secretary. Marion Maw continues as Chair of the Scientific and Medical Advisory Board. They live all over the country from Auckland to Dunedin and cover quite a spectrum of retinal eye conditions as well as a couple with normal vision. Mind you "normal" takes on a different perspective when visually impaired is normal in our group!
The Wellington branch has been busy this year being involved in organising the launch of the Save Our Sight campaign which is covered later in this newsletter. My thanks go to Wellington branch for also organising our successful AGM on 20 September. All the speakers were great communicators, being entertaining at times as well as very informative. I came away from it feeling that we need to do more to reach out to those people who have recently been diagnosed with retinal degenerative disorders but who are not (yet) eligible for Foundation membership. To do this we need to link with professionals who come into contact with these people. We have work to do to find out what resources are available from different government and community agencies for non RNZFB members.
We are a small group of people who are all volunteers apart from part time paid work by our secretary, Janet Palmer. These are talented and busy people with whom I am proud to be associated. Michael Turner who retired from the RNZFB Board earlier this year, facilitated our planning meeting on 21 September when we looked at what we do and what we should focus on.
To reach out with our cope and hope message, we need our branches and all our members to network and refer us by word of mouth. Since the AGM, inaugural meetings have been held in Paraparaumu and Palmerston North to form support groups to be known as Kapiti Coast and Manawatu support groups respectively. Over 20 people came to each meeting. It is great that local people have come forward offering to get involved and keep the momentum going. I am conscious that for the majority of you, this newsletter is our primary source of contact and information as many of you are in rural and small town areas. Even people who live in the "big smoke" can find it difficult to attend meetings. We have decided to have our own 0800 telephone service from early next year. More about that next time.
Recently, Camille Guy and I took part in the foyer displays at the Australian and NZ College of Ophthalmologist's conference held in Auckland. John Ferguson filled in for us on the second day. Our thanks to Novartis for generously allowing us some of their space to display our publications and a poster. Camille Guy also represented our society as a patient panel member at an adjunct meeting of professionals discussing the concept of Quality of Vision in AMD. So we are working to get the name Retina NZ Inc out there.
I welcome feedback on issues affecting you as a member of Retina NZ. Email firstname.lastname@example.org Phone 03 3795 807.
STUDY LEADS TO DISCOVERY OF NEW AGE RELATED MACULAR DEGENERATION (AMD) GENE
From US Foundation Fighting Blindness, October 21, 2003
An exciting gene discovery by an FFB funded researcher adds to the growing proof that macular degeneration can be hereditary. This is the first gene mutation found that is directly tied to age related macular degeneration (AMD). The discovery of this gene mutation bolsters hope for a therapy to prevent and potentially cure AMD.
Dennis W. Schultz, Ph.D., of Casey Eye Institute of Oregon Health & Science University, with his colleague Michael Klein, M.D., and a team of researchers, reports the finding in an article to be published this December in Human Molecular Genetics. The researchers describe a mutation of a gene called HEMICENTIN 1. The mutation was discovered in multiple generations of a large family with many members with AMD.
AMD is a progressive disease of the macula, the portion of the retina where central vision is the sharpest. Approximately one in four Americans 65 and older has AMD or is at significant risk for AMD. It is estimated that 42 million Americans will be living with the disease by the year 2030.
Gerald Chader, Ph.D., MD, hc, chief scientific officer of The Foundation, considers the discovery important and noteworthy. "I believe," he states, "that it will lead to the detection of other AMD causing genes and ultimately to treatments." Funding by the Foundation Fighting Blindness led to earlier discoveries of genes responsible for macular degeneration, including the ABCR gene for Stargardt disease, a juvenile form of macular degeneration. Additionally, FFB funded researcher Johanna Seddon, M.D., found a greater likelihood of AMD among relatives of individuals with the ABCR gene in her studies of family members and of twins.
Gene therapy holds tremendous potential for treating retinal degenerative diseases. This was dramatically proven a couple of years ago in the dog "Lancelot." He and his littermates, born blind with LCA (a form of retinitis pigmentosa, (RP), had their functional vision restored through gene therapy.
Dr Schultz's research shows that a HEMICENTIN 1 mutation is only one contributor to AMD. Dr Chader noted that although we are seeing a definite risk due to inheritance, we also know that environmental factors, such as cigarette smoking, diet and blood pressure can play a role.
To read the Human Molecular Genetics abstract of the article online, click here http://hmg.oupjournals.org/cgi/content/abstract/ddg348v1 or go to http://hmg.oupjournals.org/cgi/content/abstract/ddg348v1
THE S.A. AND G.J. OMBLER CHARITABLE TRUST AWARDS TWO SUMMER SCHOLARSHIPS
This year the Ombler Trust has awarded two summer scholarships for the Study of the Retina. This is because last year there was no suitable Auckland applicant to take up their biennial offer. The two 10 week summer scholarships awarded this year go to the following:
Title: "The Use of Heidelberg Retina Tomograph II (HRTII) Oedema Module in Screening and Assessment of Diabetic Retinopathy"
General Aim of the Study: To evaluate the use of scanning laser technology in screening and assessment of sight threatening diabetic retinal diseases.
Specific Aim of the Study: To determine the correlation between the oedema index, derived by Heidelberg Retina Tomograph II (HRTII) Oedema Module, with clinical grading and severity determined by current assessment methods for diabetic retinopathy.
Supervisor: Dr Mark Donaldson, Dept of Ophthalmology Student, Serena Park, third year medical student.
The Ombler Trust studentship at the University of Otago was awarded to Boyu Xu to carry out research in the Biochemistry Department under the supervision of Drs Marion Maw and Shubiau Wu. During 2002 Boyu, also known as Janet, has studied the third year papers for a BSc degree and plans to enrol for a MSc next year. The studentship will enable her to carry out a gene cloning and expression study as a part of Dr Maw's retinal research team. This study forms part of a longer term project to characterise the molecular mechanism of an inherited
X linked retinal disorder that affects a New Zealand family. This wider project is being carried out in partnership with the family and in collaboration with Auckland ophthalmologists Drs Carolyn Hope and Dianne Sharp.
DR RACHEL BARNES JOINS RETINA SCIENTIFIC AND MEDICAL ADVISORY BOARD
The Executive Committee of Retina NZ has been very pleased to appoint Dr Rachel Barnes to its Scientific & Medical Advisory Board on the recommendation of its Chair, Dr Marion Maw. Dr Barnes C.V. follows:
Since February 2003, I have been employed full time as a consultant ophthalmologist by Counties Manukau District Health Board.
At the beginning of August, I will reduce my hours there to allow me to pursue other employment activities, including a position
in the central Auckland Ophthalmology department, and my work with Retina Specialists.
My subspecialist area of interest is medical disease of the retina. In particular, age related macular degeneration, inherited retinal disorders and vascular retinal disease including diabetic retinopathy. I am experienced in the use and interpretation of specialised diagnostic techniques such as fluorescein angiography, indocyanine green angiography and electrophysiology. I am also very comfortable with both conventional laser treatment and photodynamic therapy.
Training and experience:
I have completed three years of vocational training as a specialist registrar in ophthalmology in New Zealand, followed by 2 years of fellowship training in the United Kingdom. This has included a one year medical retina fellowship at Moorfields Eye Hospital in London and 6 months working with Simon Harding at the St Paul's Eye Unit in Liverpool.
1/1/02 31/12/02 Medical Retinal Fellow, Moorfields Eye Hospital.
In my position at Moorfields I worked mainly with Professor Alan Bird. In Prof. Bird's clinics we saw many patients with unusual retinal conditions, particularly in the dedicated genetics clinics, where tertiary referrals from throughout the UK were assessed. This was a great opportunity to become familiar with conditions that are encountered only rarely in other ophthalmic practice. In addition, I attended a weekly uveitis clinic with Mr Carlos Pavasio, and have thus been able to gain experience in the management of ocular inflammation. I worked once per week in a busy vascular medical retinal clinic with Mr Phil Hykin, which allowed me to add to my already fairly extensive experience with diabetic eye disease and retinal vascular occlusions. In the second half of the year I attended the ocular oncology clinic with Mr John Hungerford. This has given me confidence in differentiating between benign and malignant ocular lesions, and in the monitoring of suspicious lesions.
2/7/01 31/12/01 Medical Retinal Fellow, St Paul's Eye Unit,
Royal Liverpool University Hospital.
The St Paul's Eye Unit provides basic eye services to most of Liverpool, with a catchment of approximately 600 000 people. However, in some areas of expertise, such as photodynamic therapy (PDT) and ocular oncology, it provides a tertiary referral service to a much larger area, with patients coming from all over the UK. While working in this position I participated in the photodynamic therapy service, the diabetic retinal screening service, and attended medical retina, uveitis, ocular oncology and general ophthalmic clinics. Two areas in which St Paul's eye unit is particularly strong are PDT and diabetic screening. I attended 1.5 dedicated PDT clinics per week during which up to 15 patients were seen for assessment and treatment if appropriate. I also participated in weekly meetings in which we reviewed the numerous referrals (with angiograms) received each week by the service. Consequently, I have become very comfortable with interpretation of fluorescein angiography and the decisions regarding treatment with PDT. I also worked closely with Dr Deborah Broadbent, director of diabetic eye screening. St Paul's has had a very successful mobile photographic diabetic eye screening program running for 10 years and I took the opportunity to gain useful insights into setting up and running such a service.
OXFORD GENETICIST DELIGHTS AUDIENCE
By John Gibb, Otago Daily Times, 24 October 2003
Oxford University Human Geneticist Professor Bryan Sykes exploded the foundations of racism during his UNESCO New Zealand science lecture in Dunedin last night. During a witty and wide ranging address, the best selling scientific author proved cutting edge science can be highly entertaining. He spoke to a packed 550 seat St David Street lecture theatre at the University of Otago. The event had been fully booked since Monday, in the biggest demand for a public science talk in the theatre's history, officials said.
Professor Sykes said studies of mitochondrial DNA confirmed the reality that all humans were closely inter related if analysis went back far enough. Almost all modern Europeans were descended from seven ancient maternal ancestors. The basis for common racial stereotyping along national ethnic lines was "completely bogus".
Professor Sykes recalled breaking his shoulder after riding a motor cycle into a palm tree during a holiday in Rarotonga. It was there he had begun studying the controversial origins of modern Polynesians. Mitochondrial DNA studies, based on maternal descent, confirmed Polynesians had migrated deliberately from Asia, he said.
YOUR QUESTIONS ANSWERED ABOUT STARGARDT DISEASE
Just a note to say how well you put together your news
letter very informative.
As a mother of a son with Stargardt Disease I am always interested in reading any information on his disability. In your next issue I would be grateful to read the most up to date info regarding research, eye replacement or any new gene research you can write about. Look forward to your reply. Regards.
In response to this query, Dr Marion Maw, PhD, carried out a literature search for recently published studies on Stargardt disease and also visited a favourite website, the US Foundation Fighting Blindness at http://www.blindness.org. The latter contained a news release concerning a recently published study on a possible future drug treatment for Stargardt disease. This informative and interesting item is reproduced below. Elsewhere in this newsletter is an article "What is Stargardt Disease? for the benefit of all readers. EDITOR.
POSSIBLE FUTURE TREATMENT BREAKTHROUGH FOR STARGARDT DISEASE
"Acne Medicine Could Prevent Vision Loss"
Researchers supported by The Foundation Fighting Blindness have discovered a potential drug treatment for Stargardt disease, the leading cause of early onset macular degeneration. Dr Gabriel Travis and colleagues at Jules Stein Eye Institute of UCLA and Dr Paul Sieving, Director of the National Eye Institute found that daily doses of Accutane, a drug used to control severe acne, slowed the course of disease in the Stargardt mouse.
This current work toward developing a treatment, published in the current issue of Proceedings of the National Academy of Sciences, illustrates the benefits of rational drug development in the treatment of genetic diseases. By first understanding the underlying biological consequences of a disease, researchers can then test drugs in animal models that would likely prevent or slow its progress.
Uncovering the Mysteries of Stargardt Disease:
In 1997, researchers, supported in part by The Foundation, discovered mutations in a gene called ABCR that cause Stargardt disease. In 1999, Dr Travis developed the Stargardt mouse, giving researchers a living laboratory to understand the function of the ABCR gene. ABCR was discovered by Dr Travis to play a role in the transport of a vitamin A derivative, called all trans retinaldehyde, out of photoreceptor cells. Vitamin A and its chemical derivatives are a critical part of the visual cycle, the process that converts light into an electrical signal.
Mutations in the ABCR gene prevent the transport of all trans retinaldehyde through photoreceptor cells, resulting in a build up of chemicals that form a toxic substance called lipofuscin. Patients with Stargardt disease have very noticeable accumulations of lipofuscin in the retinal pigment epithelium (RPE), a cell layer beneath the retina that supports the health of photoreceptor cells. Lipofuscin first causes RPE cells to die. Without RPE cells, the photoreceptor cells in the macula, the central portion of the retina, also die, leading to a profound loss of central vision.
A Possible Treatment Emerges:
Further research found that lipofuscin accumulates at a greater rate with increased rod photoreceptor cell function. In other words, the more light a rod photoreceptor cell processes, the more lipofuscin. Earlier findings showed that when Stargardt mice are raised in dark environments, they have less lipofuscin.
Based on his observations in normal mice, Dr Sieving proposed to test Accutane, because it is known to slow the function of rod photoreceptor cells. Patients who take Accutane experience delays in dark adaptation, sometimes referred to as night blindness. When compared with untreated controls, Accutane treated Stargardt mice had virtually no additional lipofuscin deposits. This finding suggests that Accutane suppresses the toxic accumulation of lipofuscin and may offer patients with Stargardt disease a treatment that prevents or slows vision loss.
A Word of Caution:
Although this breakthrough is exciting, it is important to note that Accutane is a powerful drug with the potential for serious side effects such as liver toxicity, severe depression, possible increased risk of suicide and birth defects. Also, because treatment with Accutane would not restore lost vision, only newly diagnosed patients would be expected to benefit from this therapy. Patients who have already lost their vision to Stargardt disease would likely only experience complications of night blindness, further hampering their remaining peripheral vision.
It may be preferable to evaluate other similar but possibly less toxic drugs. Therefore, at this time, the study authors and The Foundation Fighting Blindness cannot recommend Accutane for patients with Stargardt. Pre clinical studies and human clinical trials will have to carefully assess the long term benefits and risks of this therapy before it can be recommended.
A Word of Hope:
Commenting on these findings, Dr Sieving said, "All over the world, researchers supported by the NEI and FFB are gaining insights into the root causes of retinal disease. Armed with this knowledge, we can at last develop therapies that overcome the biologic consequences of a disease causing gene mutation. As a scientist and clinician, I am excited about the discovery of a potential treatment for Stargardt disease. As the director of the NEI, I am even more enthusiastic knowing that the opportunity to develop treatments and cures for retinal diseases is limitless. This breakthrough is the tip of a very large iceberg. We live in exciting times!"
WHAT IS STARGARDT DISEASE?
Information courtesy of The Foundation Fighting Blindness
Stargardt disease is the most common form of inherited juvenile macular degeneration. It is characterized by a reduction of central vision with a preservation of peripheral (side) vision.
What are the symptoms?
Stargardt disease, also known as fundus flavimaculatus, is usually diagnosed in individuals under the age of 20 when decreased central vision is first noticed. On examination, the retina of an affected individual shows a macular lesion surrounded by yellow white flecks, or spots, with irregular shapes. The retina consists of layers of light sensing cells that line the inner back wall of the eye and are important in normal vision. The macula is found in the center of the retina and is responsible for the fine, detailed central vision used in reading and color vision.
How quickly will vision fade?
The progression of visual loss is variable. One study of 95 individuals with Stargardt disease showed that once a visual acuity of 20/40 was reached, there was often rapid progression of additional visual loss until acuity was reduced to 20/200 (legal blindness). By age 50, approximately 50 percent of all those studied had visual acuities of 20/200 or worse.
Eventually, almost all individuals with Stargardt disease are expected to have visual acuities in the range of 20/200 to 20/400. The reduced visual acuity due to Stargardt disease cannot be corrected with prescription eyeglasses or contact lenses. In late stages of the disease, there may also be noticeable impairment of color vision.
Is it an inherited disease?
Stargardt disease is almost always inherited as an autosomal recessive disorder. It is inherited when both parents, called carriers, have one gene for the disease paired with one normal gene. Each of their children then has a 25 percent chance of inheriting the two copies of the Stargardt gene (one from each parent) needed to cause the disease. Carriers are unaffected because they have only one copy of the gene.
Recent findings in rodent models of Stargardt disease find that unprotected, prolonged exposure to light can accelerate vision loss. Therefore, The Foundation Fighting Blindness strongly recommends that patients with Stargardt wear brimmed hats or visors and sunglasses when outdoors.
HEATING WATER IN THE MICROWAVE OVEN A WARNING!
Reprinted from Age Concern Inc. Newsletter, May 2003
A short time ago my 26 year old son decided to have a cup of instant coffee. He took a cup of water and put it in the microwave oven to heat up something he had done numerous times before. I am not sure how long he set the timer for but he told me he wanted to bring the water to the boil. When the timer shut the oven off he removed the cup and as he looked into it he noted that the water was not boiling. Then instantly the water in the cup blew up into his face. The cup remained intact until he threw it out of his hand but all the water had flown out into his face due to the build up of energy. His whole face is blistered and he has second degree burns which may leave scarring. He may also have lost partial sight in his left eye.
While in hospital the doctor who was attending to him stated that this is a fairly common occurrence and water [alone] should never be heated in a microwave oven. If water is heated in this manner, something such as a wooden stick or a tea bag should be placed in the cup to diffuse the energy.
Here is what our science teacher has to say on the matter: "Thanks for the microwave warning. I have seen this happen before. It is caused by a phenomenon known as super heating. It can occur any time water is heated and will particularly occur if the vessel that the water is heated in is new.
"What happens is that the water heats faster than the vapour bubbles can form. If the cup is very new then it is unlikely to have small surface scratches inside it that provide a place for the bubbles to form. As the bubbles cannot form and release some of the heat that has built up, the liquid does not boil and the liquid continues to heat up well past its boiling point. What then usually happens is that the liquid is bumped or jarred, which is just enough of a shock to cause the bubbles to rapidly form and expel the hot liquid. The rapid formation of bubbles is also why a carbonated beverage spews when opened after being shaken".
INAUGURAL MEETING OF KAPITI SUPPORT GROUP
On Monday 22 September 2003, Elizabeth East, in her capacity as National Co ordinator, Peer Support hosted a get together for local Retina NZ members and others living with sight loss in the Kapiti/Horowhenua area to meet with the newly elected President, Kaye Newton, from Christchurch. Twenty people attended this meeting, held at a local retirement village, and by the end, people were exchanging contact details. Two people have since commented, that they no longer feel so isolated since attending the meeting. One person asked if they could become a member of Retina NZ. It is hoped that a Kapiti Support Group will be formed for interested people as a result of this meeting. As many Kapiti members are over 65, they find the thought of a train journey and then a bus journey rather daunting, so tend not to attend Retina NZ meetings held in Wellington, which is more than 50 km away.
As a result of the success of the Kapiti meeting, Elizabeth East is now working with Alex Thompson of Palmerston North to set up a support group for the Manawatu area. An inaugural meeting was held in Palmerston North on 7 November 2003. Details of the Manawatu group can be obtained by phoning Alex Thompson on 06 356 9611.
INTERESTED IN A ROTORUA/BAY OF PLENTY SUPPORT NETWORK?
One of our members has noted that our branches are based at the 4 main centres. He lives in Rotorua and wonders whether there is anyone else in his area (Rotorua/Bay of Plenty) who is interested in having contact with others who are facing the challenges of living with reduced vision. If there is some interest, he is prepared to set up a support network. In the first instance he can be contacted in the evenings on 07 345 6448. From Peter Harrington
THE FIRST LESSON!
By Norm Wilkinson, Christchurch Branch member
In the beginning was the word and the word was Microsoft. It was morning of the third day and there was light upon the keyboard and Peter saw that it was good though for this pilgrim it was as looking through a mirror darkly. I didn't know a font from a fish hook. Then I came unto the high priest, Peter, and he bid me sit down and press the Windows key and I did as he instructed. There was the sound of trumpets and tinkling of bells. Then the menu did appear and was there a vision before me. Then came bolts of lightening made up of copying, cutting, pasting selecting and inserting. There was no escape. Word and enter did I hit, then the document one was made flesh and I wrote upon it. After selecting text and hitting the words departed the tablet and there was a gnashing of teeth. Then on the edit scroll, I hit restore and it came to pass and there was much rejoicing. The prophet was very pleased and smiled on me; I think.
Sadly this old dog was lazy and suffering from memory loss. Thus it was that by the sixth day all had been deleted from my memory bank. Peter the patient prophet was not pleased but persisted thus it was that we continued with JAWS, sometimes the pupil became petulant and felt a plague was upon him. The lessons continued on how to write upon a tablet, now called a disk, and it came to pass that the script could be transferred from one tablet to another. Then was email revealed and the scales fell from mine eyes with a transforming experience on the road to Darfield. Many messages were sent to me which I did not want or understand and were hurled into the pit of deletion. Then did my cup overflow, the veil of the temple was rent and there was THE INTERNET. Thus it was fulfilled that I should worship the great satellite in the sky and surf the net for ever and ever. All praise to the prophet. Amen.
IN MY DIMMING VIEW
By Camille Guy
Like many women of my generation, I came to computer technology late and reluctantly. But now I am just so grateful that I did. Last week I completed a one week refresher course in computer adaptive technology at the Auckland RNZFB. I brushed up on file management, email, and began to master the Internet; all using the JAWS screen reader. That software programme reads each letter aloud as I type it, or reads sentences and paragraphs to me. I really recommend that anybody losing sight does one of these courses, whatever age you are, and whether working or not. If you can possibly get access to a reasonably up to date computer and master the basics of touch typing, get in touch with RNZFB about some training.
There were two demos of advanced adaptive technology at the Foundation that week. A British woman demonstrated a battery operated UltraCane, nick named the "bat" cane that uses ultrasonic echoes to pick up information about objects in your path and convey that information via vibrations in the cane's handle. This retails for about US$600. The other demo was of the latest in voice recognition computer software. With this installed in your computer, you need only speak to the computer to read and write documents and email messages. It can even be done from another room, using a wireless headset with microphone.
My imagination turned to a future where, standing in the kitchen and wearing a headset, I could access recipes from my computer. "Open Julia Child," I heard myself command. "Go to recipe Pumpkin Pie. Read first line." And all without putting sticky fingers on a recipe book. All that stands between me and this lovely dream is several thousand dollars.
RNZFB adaptive technology manager Harris Rosensweig warns that it is important to first master computer basics before opting for this no hands approach to computer use. That is because we need to understand some basic concepts so that we can operate the PC intelligently, and negotiate our way out of the inevitable screw ups.
None of this computer software comes cheap. People in employment may get some assistance from Workbridge, and there are a few other sources of funding available to those determined enough to acquire these wonderful technological aids for the blind and vision impaired.
Pinned to my computer on a gorgeous sunny day like today I feel sad that I cannot be out in the garden grubbing in the soil, putting in seedlings and clearing the weeds. Not that gardening is completely ruled out. I have cleared out most of my cottage garden plants and substituted subtropicals. Close up I can see those bold spiky plants, and manage to weed around them. I intend mass planting colourful flowers like zinnias in a central bed this summer. And I am perfectly capable of turning the compost and watering.
But I may as well admit that I do miss surveying the garden at the end of the day and taking pleasure in all that I have achieved. I miss seeing blackbirds eyeing where I am digging, and keeping their sharp eyes out for any exposed insects and worms.
I am getting better at identifying birds by sounds: their songs, rustling, wing noises and so on. A visit to the Hauraki Gulf Island Tiritiri Matangi last summer was a real treat. I might not see the stichbird, but I now know its voice.
NEWS FROM THE BRANCHES
From Lynn Keogh, Branch Chairperson
The committee of Retina NZ Inc Otago/Southland branch invite all members, their families and friends to a barbeque to celebrate Xmas at Belleknowes Golf Club on Sunday 7 December commencing at 12 noon. We look forward to seeing as many members as possible at the barbeque as this is the last branch function June Ombler, our branch founder, will be attending as she is moving to Wellington in February 2004.
From Kaye Newton
At our spring meeting, we had an interactive session with Gail Hughes, the occupational therapist from the Low Vision Clinic based at Burwood Hospital. It was gratifying to learn that one corner of the hospital system is accessible within a few weeks. Many useful hints and tips were shared so all thirty plus people attending would have learned something of value.
Our end of year gathering is at 5.30 pm on Saturday 29th November. Any visitors from other areas would be welcome if you are in Christchurch that weekend. Bring a salad to RNZFB, 96 Bristol Street and join us.
From Denise Keay, Committee member
Spearheaded by the New Zealand Association of Optometrists, Retina NZ, and Blindness Awareness and Prevention (BAP) RNZFB, the Save Our Sight Campaign (SOS) is a month long public education programme about keeping eyes healthy instead of just opening them in the morning and expecting them to work. SOS is also supported by the Save Sight Society and Diabetes NZ.
Retina NZ's Wellington Branch undertook to organise the Campaign's launch at the Beehive on 31 July. Host was the Hon Ruth Dyson, who spoke on "Preventing Blindness is Everyone's Responsibility". Kaye Newton acted as MC; other speakers were Phil Donaldson (President Elect of NZAO), Wellington ophthalmologist Dr Tony Wells, Gordon Sanderson (representing Save Sight Society), Don McKenzie on "The Foundation is a club we don't want to grow", and Tony Haas.
Around 80 people were there ophthalmologists, optometrists, MPs, officials from government departments with an interest in health or disability issues, and reps from a range of agencies with an interest in eye care.
Retina NZ's other contributions to SOS 2003 were the production of our Coping Strategies pamphlet (distributed by NZAO and snapped up by people learning to live with sight loss), and helping organise the whistle stop tour of Professor Paul Mitchell, world renowned expert on AMD. His visit, (sponsored by Novartis) attracted wide media coverage. Wellington's Ina Smart starred in a Dominion Post article!
BAP organised Funky Eye Friday, a big hit with school kids featured on Network TV. The Campaign ended with Children's Eyecare Day on Sunday 31 August.
From North Auckland to Dunedin, optometrists donated eye exams to children aged 8 13 from lower income families. NZAO reports that more than 400 children were seen and over 200 pairs of spectacles, donated by Essilor and members of the New Zealand Optical Wholesalers Association, dispensed. A number of referrable conditions were also identified.
Watch this space for news of SOS 2004!
From: John Forman
New Zealand Organisation for Rare Disorders (NZORD)
Phone : 04 566 7707. Email: John.email@example.com
BEST's Disease or vitelliform dystrophy:
Do you have any family with this condition that would be interested in making contact with another family in Western Australia? I have had this request from the WA Genetic Support Council, who do not have any local families to provide support or information.
EDITOR's NOTE: This is a juvenile form of Macular Degeneration which is normally hereditary. We have no one listed on our Society database with this dystrophy, so please pass this message along to any family contacts you may have.
DO YOU NEED HELP OR ADVICE?
The Retina NZ Peer Support Scheme is a free and confidential service, operating nationwide. To make contact, telephone 0800 243 33 33, press 1 for General enquiries and then ask the call centre operator to put you in touch with a Peer Supporter in your area.
Ring any of the following freephone numbers if you want to speak to a geneticist or genetic counsellor about your own particular diagnosis of RP, Macular Degeneration or other retinal degenerative disorders:
Auckland Genetic Hotline
ask for Dr Andrea Vincent 0800 476 123
Wellington Genetic Hotline 0508 364 436
Christchurch Genetic Hotline 0508 364 436
(South Island callers ask for
Dr Caroline Lintott)
Janet Palmer, National Secretary
P.O. Box 27 177, Wellington
Phone: (04) 380 2160. Fax: (04) 389 5254. Email: firstname.lastname@example.org
CLOSING DATE FOR RECEIPT OF ARTICLES FOR THE NEXT ISSUE IS TUESDAY 10 FEBRUARY 2004.