Summer Newsletter

February 2002, Number 12

EDITORIAL.

This year brings a stream of research articles reported in newspapers in several countries. In this issue there are articles about retinal research being done in New Zealand, America, Japan, Germany, England, and Canada. All these give us a hint as to some of the research to be included in the programme for the 12th Retina International Congress and Conference to be held in Chiba, Japan from 31st July to 3rd August this year. it all sounds very promising for the development of future treatments for retinal disorders.

The report from Canada tells us that a simple treatment is now available for people born with Wagner's disease, a very rare retinal disorder which affects a few families worldwide. Although this treatment will only benefit a few hundred people, preventing them from going totally blind, it is significant, being only the third treatment for people with retinal disorders that I have heard about to date. The other two are Refsum Disease and Gyrate Atrophy, both of which require diet modification.

All Auckland Branch members should take note that there is a study being conducted by Dr Grace Soong of the Department of Optometry and Vision Science at Auckland University on Mobility Behaviours of vision-impaired adults, in which you are asked to participate. As a participant it will take two hours of your time, for which you will be paid $70. 00. You can contact Dr Soong by any method she lists in her article. A print copy of the Participation Information Sheet is enclosed with the newsletter for all Auckland members, and for those receiving it on tape or by email, it is added as an attachment at the end of this newsletter.

Also in this issue Gaynor Edgar, a parent member of Ming Ming, writes a very informative report on the Lebers Congenital Amaurosis Conference that she attended with Ming Ming in the U. S. A. last September. We have articles about three of our members - Kaye Newton, Retina's Vice President and Treasurer, Wellington member Allan Jones winning the Foundation for the Blind Achiever's Award and one from Norm Wilkinson from Christchurch who writes a humorous article with sad undertones, and from Retina's President, and more.

June Ombler
Phone: 03 455 8813. Email: jombler@xtra. co. nz

RESEARCH

RESEARCH IN VISION IMPAIRMENT

Dr Grace Soong, a vision researcher at the University of Auckland is currently conducting a project investigating mobility behaviours of vision-impaired adults (over 18 years of age).

She would appreciate it if as many Auckland Branch members as possible could assist by participating in this project. The "Participant Information Sheet" is enclosed with this newsletter for all Auckland Branch members for further details.

For further information please contact Dr Soong using any of the following contact details:

Dr Grace Soong
Department of Optometry and Vision Science
University of Auckland
Private Bag 92019
Auckland
Tel: 09 373 7599, ext 6020
Fax: 09 308 2342
Email: g. soong@auckland. ac. nz

RESEARCHERS UNCOVER A TREASURE TROVE OF RETINAL GENES
By Tom Hoglund, U. S. Foundation for the Blind

A recent genetic study, published in the November 30 edition of the journal Cell, could speed the identification of mutant genes that cause retinal degenerative diseases and greatly increase our understanding of the retina. In this study, Dr Constance Cepko of the Howard Hughes Medical Institute at Harvard Medical School and colleagues identified a large set of previously uncharacterized genes expressed in photoreceptor cells. Most retinal degenerative diseases result from mutations in genes that function in photoreceptor cells. With this study, researchers can now begin to screen these newly discovered genes to determine whether they contain disease-causing mutations.

By comparing genetic material from mouse retinas with genetic libraries from the Mouse and Human Genome Projects, Dr Cepko and colleagues found 264 newly characterized genes that are expressed primarily or exclusively in photoreceptor cells. Due to their nearly exclusive expression in photoreceptor cells, many of these genes are thought to be "candidate genes" for retinal degenerative disease in that, if they are mutant, they would most likely affect the function of photoreceptor cells. Intensive work to screen patients for these various genes can now move forward. Already, Dr Stephen Daiger, a Foundation-supported researcher from the University of Texas in Houston, has used data from this study to identify a mutant gene causing a dominant form of retinitis pigmentosa.

Dr Cepko's work exemplifies the quickening pace of genetic research. With data available from the Human Genome Project and other genetic libraries, researchers can now quickly identify large numbers of genes that are expressed in the retina. Similar efforts are ongoing to identify all the genes that function in rod and cone photoreceptor cells and retinal pigment epithelial cells. These cell types harbor the mutant genes causing various forms of retinal degeneration.

Identifying mutant genes is crucial to developing treatments. With each gene discovery, a new group of patients becomes eligible for gene therapy. Also, each gene can be studied to determine how it functions in the retina and how mutations in the gene lead to vision loss. Such work will lead to new therapies that overcome the underlying disease process. Roughly half the genes known to cause retinal degeneration have been identified. With appropriate funding, the remaining genes are now just waiting to be discovered.

STUDY SUGGESTS WAY TO REDUCE DISEASED EYE CELLS
New York (Reuters Health) 14 November, 2001

Scientists in Japan have found a potential way to replace damaged cells in the eye's retina. Their animal research suggests the technique could someday prevent blindness from degenerative diseases of the retina such as macular degeneration and retinitis pigmentosa. In experiments with rat eye cells, Dr Masatoshi Haruta of Kyoto University and colleagues found that some genetic tinkering could cause cells from the iris to take on new, light-sensitive features like those of the retina.

The retina is a thin membrane at the back of the eye that captures images that are then transmitted to the brain through the optic nerve. Degenerative diseases of the retina are leading causes of blindness. Once they are damaged, retinal cells cannot regenerate on their own. So Haruta's team investigated whether it might be possible to get cells from the nearby iris to take on the retina's duties. The surgical removal of part of the iris, they note, is already an established practice in patients - used, for example, to extract foreign objects or tumors from the eye.

The researchers took iris cells from rat eyes, then introduced a gene called Crx that is normally expressed in the photoreceptor, or light-sensitive, cells of the retina. With the help of Crx, the iris cells expressed rhodopsin, a substance in the retina that adapts the eye to changes in light, according to the report released Monday in the advance online publication of Nature Neuroscience for December. In humans, Haruta's team notes, such a technique would allow doctors to "feasibly obtain" a patient's own tissue for use in retinal regeneration. It might be possible to remove some iris tissue, coax the cells into taking on retinal qualities, then transplant them back into a patient's eye.

Although this study is just a beginning, the researchers conclude that the findings raise "the possibility that (iris) cells constitute a potential source of retinal transplantation in patients with retinal degenerative diseases or damaged retinas. "

BREAKTHROUGH IN THE BATTLE TO CURE BLINDNESS
Daily Mail (London), 6 December 2001

Scientists have given the blind new hope that they may one day see again. Researchers from the University of Munster in Germany have found a way of making severed optical nerves grow. Their method could also be used to treat paralysis and spinal injury, neurologists hope. The breakthrough has been hailed as the most significant advance in possible cures for blindness for a decade.

The scientists were able to stimulate optic nerves to grow 14mm - more than three times further than in previous attempts - with the help of a specific protein found in the eye. The regenerated nerves then found a way to rewire themselves to the brain and transmit normal electrical signals.

The experiment, carried out on rats, is a first in mammals and may hint at ways of reversing some types of blindness in people, New Scientist magazine reports today.

In many simple creatures damaged nerves mend themselves but in mammals this would risk rewiring nerves the wrong way, producing scrambled vision. Regrowth in mammals is naturally prevented by proteins released when the optic nerve is damaged. The scientists, who reported their findings in the journal Experimental Neurology, sidestepped this problem by persuading the body to release another kind of protein that helps nerves to regrow. They stitched two cut ends of severed optic nerve together then released the protein. The part of the nerve which regrew, called an axon, sends the electrical impulses to the brain.

TRANSPLANT HOPE FOR EYE CELLS
The Times (London), 17 December, 2001

Scientists have successfully transplanted human retinal cells into blind rats, enabling the animals to see well enough to locate food.

The experiment on the rats, bred to go blind shortly after birth, may lead to new treatments for people whose eyesight deteriorates through damage to the retina, in particular from age-related macular degeneration, which affects more than 500,000 people in Britain. The study was done by scientists at the University of Sheffield, the Institute of Ophthalmology at University College London, and the University of Utah.

SCIENTISTS CREATE ARTIFICIAL EYEBALL
By Charles Scanlon, BBC Tokyo Correspondent, 5 January 2002

Researchers in Japan say they have succeeded in growing the world's first artificial eyeball. They said the process could help develop treatments for people with eye problems.

The scientists at Tokyo University have been experimenting with tadpoles in an effort to develop treatments for the blind. They removed cells from frog embryos and then implanted them in the tadpoles.

The leader of the team, biologist Makoto Asashima, said a cell was first soaked in a special medium and was then transplanted into a tadpole whose left eye had been removed. A week later the researchers confirmed that the eyeball was connected to the optic nerves and there was no sign of it being rejected. Professor Asashima said the process could have applications for human beings and could lay the groundwork for providing treatments for the visually impaired.

Other scientists have yet to assess the significance of the experiment.

BIONIC EYE WITH 100,000 'CELLS' THAT BRING BACK SIGHT
Daily Mail (London) by James Chapman, 8 January, 2002

NASA scientists have built an artificial retina that could restore sight to the blind. They have designed a computer chip with 100,000 light-detectors, each 20 times thinner than a human hair, to replace damaged sight cells in the retina.

The cells, called rods and cones, convert light into electrical impulses that travel along the optic nerve to the brain, which forms images. First trials of the 'bionic eye' will take place next year.

Dr Alex Ignatiev, the NASA scientist leading the project at the University of Houston, Texas, said: "There are some diseases where the sensors in the eye have deteriorated, but the wiring is still in place. If the damaged rods and cones could be replaced with artificial ones, retinally blind people could regain some of their sight. "

Thousands of people go blind because of retina cells that malfunction through diseases such as retinitis pigmentosa, a hereditary disorder, and macular degeneration, the most common cause of blindness in the elderly.

The NASA chips are made of a thin, light-sensitive ceramic film "grown" aboard the space shuttle. Dr Ignatiev added: "The space experiments helped us develop the ceramic detectors we're using for the bionic eye project. " Previous attempts to build artificial rods and cones failed because the photodetectors were too large to allow for normal movement of fluids in the eye. They were also made of silicon, which triggered toxic effects when it reacted with the fluids. Dr Ignatiev hopes the new artificial retina will get round both problems. Each 100,000-cell detector will have to be attached to a polymer film only 1mm square. Once in place, the film will dissolve within a fortnight, leaving the detector in place.

Dr Charles Garcia, of the University of Texas Medical School, who will act as the project's surgeon, said: "Will they work? "We won't know until we implant them in patients. The technology is in its infancy. "
To explore further, go to www. science@NASA

UNLOCKING THE SECRETS OF BLINDNESS
By Tom Spears, from The Ottawa Citizen, 12 January 2002

Joanne Gaida has lived most of her 24 years with "a quiet paranoia," a constant fear that the hereditary condition that tore apart the inside of one eye might make her other eye blind, too. She wasn't allowed any rough-and-tumble play, and her mother would check her vision every time she fell off her bike to make sure nothing had torn her fragile retina.

Now the Trenton woman and her husband want children of their own. But they know each child would have a 50% chance of inheriting the same condition, and wondered how they would manage the years of watching and asking: Is it this child? Or that one? Will my kids lose their sight? With dozens of other family members, they have joined a genetic study at the Ottawa Eye Institute that is now returning enormous dividends.

Not only have doctors there found the gene that causes the rare eye condition called Wagner's disease, but they can use this to test newborn babies and carry out the preventive care that will protect their sight. A simple blood test will eliminate the stress and expense of testing those children who haven't inherited the gene - complex and difficult tests that must be repeated every few months for a lifetime. It will also show which children need the preventive laser treatment that removes weak spots in the retina - the cells at the back of the eyeball that will eventually rip away from their base and destroy the patient's sight, usually in adolescence. Early laser treatment lessens the likelihood that serious tearing will occur later. And that usefulness in real patients is what sets this gene finding apart from the hundreds of disease genes whose discovery has not yet led to any treatment.

The four doctors who made the discovery are delighted that there's finally a tool to show who has this disease. "This is certainly quite a devastating disorder," said Dr Sanjoy Gupta. "It causes blindness. "

The Eye Institute took an unusual approach, bringing together the doctors who treat patients with researchers who would normally stay in the lab. In this case, the two are just steps apart, as the Ottawa Health Research Institute is just down the hall from the Eye Institute at the Ottawa Hospital's General campus. Staff in lab coats mingle with surgeons in green surgical outfits, and most, in fact, share an interest in both worlds. Dr Gupta had a PhD in genetics before becoming a medical doctor.

All they needed to trace the mysterious cause of Wagner's disease - a condition so rare only a handful of families in the world are thought to be affected - was a big family that carried it. So they turned to Joanne Gaida's mother, Marie Harvey of Ottawa. Mrs Harvey has four children, two of whom have the disease. Her late husband was one of six children, and three had it. So Mrs Harvey asked her mother-in-law for as complete a list of family members as she could supply, noting which ones had the disease. The many branches of her husband's extended family, commonly known as the Gervais clan, are scattered from here to Nova Scotia, but are concentrated in Eastern Ontario and West Quebec.

At first the doctors thought they were dealing with two large families until someone dug up a link between the two, seven generations back, showing the whole group is in fact related. Nearly half the 300 known Gervais family members have the disease.

"These are quite complex retinal tears. They are very difficult to repair," Dr Gupta said. "Twenty years ago a patient would walk into an emergency department with complete retinal detachment (i. e. a retina torn away from the back of the eye) and no hope of repair. " They went blind. Most people with the disease need laser repairs to the retina, and about 60 per cent need further surgery. Even still, many of the older members of the Gervais family are blind. It's only the young ones whose sight has been partially preserved.

An exhaustive genetics study of blood from 54 family members found everyone with Wagner's disease has the same eight "markers," a genetic fingerprint that sets them apart from those with healthy eyes. The gene involved helps regulate how the body makes collagen, a sort of chemical glue that holds tissues together in many parts of the body. This particular collagen gene only becomes active in the jelly-like material that fills the eyeball; in Wagner's disease this "vitreous" jelly grabs too tightly to the already weak retina and pulls it away. Dr. Gupta and fellow researchers Brian Leonard, Karim Damji and Dennis Bulman have published their discovery in the American Journal of Ophthalmology.

"Where this will have the greatest effect is with kids, because kids can be affected and they're extremely hard to examine" for possible eye disease, Dr Gupta said. "So often, kids are not known to be affected ... until they're much older" and eye damage has begun.

"This is now life-changing," said Dr Damji. "This is an easy test to do, and fortunately the Children's Hospital of Eastern Ontario has agreed to carry out this test for family members. "

REPORT ON LEBERS CONGENITAL AMAUROSIS CONFERENCE HELD IN BALTIMORE, USA FROM 4-6 OCTOBER, 2001 By Gaynor Edgar

I read about this conference in an American Parent Support Group magazine and decided to attend with my adopted son Ming Ming who has this eye condition. Ming Ming is 11 years old and I adopted him in China while I was over there teaching Conversational English in a Teachers' College in the middle of the Gobi Desert. This conference seemed a good way to gain more information and have Ming Ming examined and diagnosed more thoroughly than he was here in New Zealand or previously in China. He was diagnosed as "most probably LCA. "

We travelled to America on the 18th October, just one week after the terrorist attacks and this was a scary decision to make. Our only option was to change our flights to a later date but then we would have missed the conference, so we went as planned.

On the first day Ming Ming was examined at the Wilmer Eye Institute at John Hopkins Medical Center by a team of Doctors lead by Irene Maumenee, ort Professor of Opthalmology and Director, The John Hopkins Center for Hereditary Eye Diseases. This clinical evaluation included blood tests for research purposes to identify the faulty genes causing the condition. Ming Ming's eyes were tested for glasses and a prescription was given to me.

I asked more about this as in New Zealand they said he had very little if any sight and recommended he learn braille. The American
attitude is much kinder. I was told that most children like him could see a little and if they were seeing then it made sense to maximise what sight they had and enable them to see clearly. I was told to persist with the glasses for at least six months. Another reason was that they often had to treat children for eye damage that would have not occurred if they had been wearing glasses, for example a blind child walking into tree branches. And a further reason for glasses was sensitivity to light as shaded glasses often enable people to keep their eyes open outside when they would usually close them.

All these reasons apply to Ming Ming and he now has glasses but it is too early to accurately note a definite difference. However he does always face the basketball goal now to throw in the ball. He used to throw it backwards half the time before (Up to 30 times into the hoop in 45 minutes).

The conference itself took place at The Maryland School for the Blind and childcare was arranged to enable parents to attend the sessions and participate fully. The first afternoon was the Scientific programme including leading researchers from around the world. Speakers included:

* Dr Jean Bennett, Scheie Eye Institute, speaking on her group's recent success in restoring vision to an LCA dog through gene therapy.

* Dr Gene deJuan, John Hopkins, speaking on recent advances in transplantation.

* Dr Joseline Kaplan, Hospital Enfant, Paris and Dr. Ed Stone, University of Iowa, both speaking on new gene discoveries.

* Dr Connie Cepko, Harvard University, speaking on retina development and stem cells.

* Dr Mark Humayan, John Hopkins, speaking on retinal prosthetics.

These sessions were videoed and I have ordered the full set and am awaiting delivery. I hope to make these available for viewing/listening to interested persons.

I attended the following sessions on Saturday:

* The Recreational Workshop: covering games, sports, sensory crafts, and other adapted activities for vision impaired people. I was very pleased with the "beeping softball" and instructions I won in the draw for Ming Ming.

* Activities for Daily living: learning about shoe tying methods, marking identification systems, organisational strategies and adapted utensils and tools, and more.

* Guide Dogs: This was a session taken by a seeing eye graduate and was of special interest to me as Ming Ming was paired with a guide dog just three weeks before we came away. He had a great fear of dogs which he has overcome with the help of Hannie his Labrador Retriever best friend.

Next was a discussion lead by some parents of LCA children. This was very reassuring to know you were not alone in your experiences of the condition and the systems in place for support and where, how and what to do. During this session two young men in their late 20's spoke to us about their lives growing up with LCA and entering the workforce. These talks were very emotional for the listeners and tears were in most eyes. A question and answer session conducted by Dr Maumenee followed and this was videoed.

Anyone wanting further information on any specific topic can contact me at 4 West Coast Road, Te Kopuru, Dargaville, phone: 09 439 4439 or by email: gaynor@win. co. nz I will advise you when the videos arrive and become available to borrow.

This conference was a wonderful experience for both Ming Ming and I especially so because of the people we met that we are keeping in touch with and continuing to share our lives with.

PEOPLE

KAYE NEWTON - Retina New Zealand Vice President and Treasurer

Kaye Newton is a woman with an inspiring spirit. She has overcome her dual disabilities of deafness and blindness with great determination and lookspositively to the future, facing each challenge wholeheartedly as it presents itself. In our last newsletter she reported on the 7th Helen Keller World Conference held in Auckland, which she attended as the Retina NZ delegate.

Kaye was born in 1952, the youngest of five children. The family moved from a country school in Taranaki to Christchurch so she could attend the Van Asch School for the Deaf. However about that time, universal hearing aids became available and she was able to attend normal schools after all. She was good at sport and music and gained Bursary and became an Associate of Trinity College London on the piano. She went on to do a Bachelor of Commerce degree at Canterbury University while working part time. On graduating she became an Accountant in a chartered
accountancy practice.

Photo: Kaye Newton caught with both hands in hot water at a party.

In her twenties Kaye started to notice difficulty seeing at night. By the time she was diagnosed with Retinitis Pigmentosa at age 32 she hadn't been driving at night for some years. At the time she had two young boys and later had a third. "As we lived in the country at the time, giving up driving altogether was not something I wanted to think about. " It was not until after she joined the NZRP society to get their newsletters that she became aware that there was any connection with her deafness which had been from birth. Also as she was the only relative affected it never occurred to her that there could be a genetic basis for the condition. "The only advice the ophthalmologist gave me was to always wear UV glasses outside and a hat or shade to protect the eyes. This I have tried to do and I think it has helped keep my sight longer than some other people", she explained.

Her husband suffered serious head injuries in a car accident - which left her with three young children from 11 months to five to look after on her own. This forced a move back into the city which made it easier to cope with giving up driving. "That is the hardest decision I have had to make, particularly as it meant becoming a car-less household. I could have kept going, but at the time always had a preschooler in the car with me, and decided I couldn't take the risk. If I had had an accident, it would probably be with someone more vulnerable like a cyclist or a pedestrian. However there are always pluses which never occur to you at the time when you are thinking only of the loss. I biked everywhere for a few years including getting the groceries and became much fitter. At first that meant having the youngest son on the back too, until he was old enough to ride his own bike. The family would bike to soccer games and the gardens etc. It is now six years since I gave up biking so I do lots of walking, including walking half an hour each morning to work in the city - if I was driving I'd have to find the time to get my exercise some other way. "

As an adult Kaye has tended to get fully involved in any organisation she joined. Thus she served on committees for playcentre, plunket and sports clubs. She became a school board trustee from the inception of "Tomorrow's schools". She really enjoyed this role and reluctantly gave it up seven years later after returning to full-time work and to get involved in fundraising for a son's school trip to Japan.

When Kaye attended the first meeting for the RP society in Christchurch back in 1993, she became part of the inaugural committee. On becoming the Christchurch Chairperson in 1998, involvement in the national executive was automatic. Now she is Vice President and Treasurer for the National Executive of Retina New Zealand.

Kaye joined Toastmasters in 1998, and not surprisingly has been involved in that committee and is currently serving a one year term as president of Hereford Street Toastmasters Club. "I recommend anyone to join Toastmasters. It is fun as well as being able to learn and gain new skills. You learn to run and organise meetings, introduce and evaluate other speakers. There are many benefits other than just public speaking. Some people join to gain confidence. "

Now the children are growing up, Kaye is reactivating a life-long interest in music. In February last year she bought a flute and has been teaching herself to play. "I had always intended to learn when I retired - but one day decided why wait that long? I have always had a piano in the house but wanted to play an instrument that was more portable, and one that could sing. Also music is something that I will never have to give up through loss of sight. "

About ten years ago Kaye had cataracts removed in the public hospital system - both in the same year under local anaesthetics and before the waiting list criteria changed. "That made a big difference at the time - though the peripheral vision has been deteriorating since. So I strongly recommend removing them", she advises.

RETINA MEMBER WINS THIS YEAR'S RNZFB BLIND ACHIEVER'S AWARD

Allan Jones has nominated a number of people for the Achievers Awards in previous years, but this year he decided to let his own name go forward - and it paid off. Allan is the winner of the People's Choice Award. The People's Choice, a new category for the Blind Achievers' Award is awarded to someone who has made or is making a significant contribution to the community.

Mayor of Porirua City and judge of the People's Choice section, Jenny Brash, said choosing a winner in the People's Choice category was extremely difficult. "Each entrant had amazingly different but equally impressive life stories and personal achievements and who had all contributed so much to their communities," says Mrs Brash. "After a lot of consideration I judged Allan Jones as the winner of this year's People's Choice award.

"Allan stood out as someone who all his life has never let his blindness stand in the way of achieving his own personal and career goals. He has also been a tireless advocate for people with disabilities for at least 2 decades. "Through his social work career; his advocacy and lobbying usually at central government level; his teaching of students about disabilities; and his awareness raising of disability issues on radio and TV he would have reached out to thousands of people and changed their attitudes and perceptions towards people living with disability such as blindness.

"His latest challenge - being an effective President of his local Lions Club - is no mean achievement! "I believe Allan is a real inspiration for people with, or facing any type of visual impairment. "

Allan, as winner of the Members' Choice section received an original glass sculpture by Auckland-based international artist Jo Nuttall and $750. 00. His award was presented at Government House as part of the 2001 Blind Achievers' Dinner and Charity Auction.

PAR FOR THE COURSE

By Norm Wilkinson, Christchurch Branch member

Roughly ten years ago I was struck in the eye while playing golf. During a brief stay in hospital I was told that the cause of vision loss was Macular Degeneration and that I had always had this condition. Subsequently, Glaucoma was diagnosed in that eye (33mm Hg). Very slowly the impairment grew and Glaucoma was found in the other eye. It was only after the accident that I was aware of any vision loss. In the years prior, I played darts and table tennis etc with some degree of skill. Medical opinion has it that the accident had no effect in these conditions.

It becomes academic after a third front end crash while driving the car. One postie is very lucky. I narrowly missed him in a shower of rain. I hold the record for sheep killing in the district. On my way to work one morning in May, I ploughed into a flock being herded in the pre-dawn gloom. Eighteen lay dead or dying.

The first collision was even more bizarre. Again, going to work, I hit a stolen truck which had brought down power lines putting out the street lights. The now abandoned truck was left in the centre of the road when I hit it. The third event in this sad saga was more straight forward. Turning right against the rising sun, there was an agricultural vehicle waiting to turn right hidden against the shadows. It was painted green. The insurance company was very understanding. It was time to stop driving and join the RNZFB.

The greatest loss apart from driving is the inability to read and write as before. So, the obvious thing to do was learn to type. The lessons were with Peter McGlinchey, the RNZFB Christchurch Communications Instructor. After showing me the first line of keys, it was time to type the first word. After a period of denial and some depression, I thought Peter was kidding when he said "Now, the first word is "s-a-d".

He wasn't kidding!

TELSTRASATURN IMPROVES ACCESS TO DIRECTORY SERVICES FOR BLIND
For Christchurch and Wellington members

TelstraSaturn has adopted a policy to help blind and visually impaired people access Telecom's National and International directory services. TelstraSaturn will make directory assistance available to qualifying customers at $1. 25 a month. There will be no cap on the number of directory calls a customer can make (domestic or international).

Applications must be made in writing to TelstraSaturn, with proof of visual impairment, such as a doctor's report.

TelstraSaturn customers who need directory assistance when away from their own homes will continue to use the pin-activated directory service operated by the Royal New Zealand Foundation for the Blind.

The policy is the same as Telecom's, including the monthly charge. TelstraSaturn is now working through implementation issues, such as creating an application form and setting up an exemption in its billing system.

EDITOR's NOTE: This is a great system for all members who have difficulty reading the tiny print in their phone book.

LETTER

FROM: Di Hartman
Email: dijon@alphalink. com. au

1 Jan 2002

My name is Di Hartman and I am a member of the Victorian Branch of Retina Australia. I have the condition of Refsum Disease, and an overseas email friend and I have just set up a discussion list for people with Refsum. I was hoping that Retina New Zealand would publicise this in their next magazine to your members, please.

We are people affected by Refsum's Disease, sharing our experiences, coping strategies, dietary tips, etc. with Refsum patients, their families, caregivers, significant others and friends. The purpose of our group is to support, inform, advise and encourage one another as we face the many challenges of living with a rare metabolic disorder.

Disease Description
Refsum's Disease is a recessive genetic disorder and is characterized by retinitis pigmentosa, anosmia, peripheral neuropathy, hearing loss and less commonly, congenital abnormalities. The symptoms result from an accumulation in the body of phytanic acid which cannot be metabolised. A diet low in phytanic acid is therefore recommended and is considered the most important management for the majority of patients.

Our Website is http://groups. yahoo. com'group/refsums_discussion

For information about REFSUM, a condition causing multiple disabilities, go to - www. alphalink. com. au/~dijon/index. htm

Many thanks.

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 Julie McGaughran) 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: retinanz@ihug. co. nz
Website address: www. retina. org. nz

CLOSING DATE FOR RECEIPT OF ARTICLES FOR THE NEXT NEWSLETTER IS FRIDAY 3 MAY 2002.

Participant Information Sheet

Visually impaired subjects

Project: An investigation of mobility performance in visually impaired adults

Investigators: Dr. Grace Soong, Prof. Brian Brown and Assoc. Prof. Robert Jacobs

You are invited to take part in a research project designed to investigate mobility skills of visually impaired people and to determine their need for mobility training. This project will involve participation of visually impaired people as well as normally sighted people.

The experiment involves doing three types of vision tests, a scanning skill test and a mobility test. You will be required to read letters from two vision charts. The sensitivity of your peripheral vision will be tested using a standard computerised clinical instrument. You will be required to press a button if you see a small light moving towards the centre of your vision. The scanning skill test involves locating some numbers on a computer screen.

For the mobility tests, you will be required to walk through a common use corridor which will have objects such as tables and chairs placed along the corridor. To ensure your safety, the tables and chairs are placed in positions which will not cause injury. I will walk behind you to ensure that you walk safely along the corridor by avoiding contacts with any objects or doors.

In addition, you will be required to complete a questionnaire relating to your ability to walk and perform everyday tasks in the environment.

The vision and mobility tests will be carried out in one session. The tests will take no more than two hours. You may feel tired during the course of the tests, but you are allowed to take rest periods whenever you wish. You can discontinue the tests or withdraw from the study without having to give any reasons or comments. This will involve no penalty or loss of benefits in regard to the service provided to you by the University of Auckland Optometry Clinic. You are allowed to withdraw your test information within two weeks after completing the tests.

All the data collected will be confidential and when the results are published your individual results will not be traceable to you. No names will be mentioned in the report.

As a result of this research, mobility of visually impaired people will be better understood; mobility training can be appropriately recommended to visually impaired people so that they could retain their travel independence.

Your participation would be appreciated; we will pay an amount of $70 for your participation which includes your transportation fee.

For further information or questions, please contact myself,

Dr Grace Soong
Department of Optometry and Vision Science
The University of Auckland
Private Bag 92019
Auckland

Ph: 373 7599 ext 6020

Or

Assoc. Prof. Robert Jacobs
Head of Department
Department of Optometry and Vision Science
The University of Auckland
Private Bag 92019
Auckland

Phone : 373 7599 ext 6019

For queries or concerns of ethical nature please contact:

The Chair
The University of Auckland Human Subjects Ethics Committee
The University of Auckland
Private Bag 92019
Auckland

Ph: 373 7599 ext. 7830

APPROVED BY THE UNIVERSITY OF AUCKLAND HUMAN SUBJECTS ETHICS COMMITTEE
on 8 Aug 2001 for a period of 3 years, from 08/08/2001
Reference : 2001/226

(This information for subjects will be administered verbally).