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AUTUMN Newsletter

May 2003, Number 17

There is much to celebrate with this newsletter. Fifty years ago in April 1953 Watson, Crick and Wilkins (who was born and raised in Pongaroa near Wellington) proposed their double-helical structure for DNA. Their model focused attention on DNA and the development of modern molecular genetics began. They were jointly awarded the Nobel Prize in Physiology and Medicine in 1962. Fifteen years later the first complete DNA molecule was sequenced and this month it has been announced that the sequence of the complete human genome has been 99.99% completed.

George Petersen, who was a biochemistry student at Otago University in 953, went on to become the first scientist in New Zealand to work on DNA structure. He is now Professor Emeritus of Biochemistry at Otago University in Dunedin where Dr Marion Maw, Chair of Retina's Scientific & Medical Advisory Board (SMAB), manages the Retinal Degeneration laboratory in the Biochemistry Department.

The tremendous advance in genetics during the past fifty years will greatly speed the finding of treatments for people with genetic disorders. We can now be pretty sure that the first treatments will soon be available.

Another reason to celebrate is that the Royal NZ Foundation For the Blind became the Royal NZ Foundation OF the Blind at the end of April. The old Parliamentary statute had been repealed and all current members of the Foundation were, for the first time, able to vote for the new Board of Directors of nine. Congratulations to Dr Nancy Higgins, a sighted founding member of Otago/Southland Branch, who was elected as one of the Directors.

Valerie Richards, a long time member from Ashburton is to be congratulated for winning the 2002 Blind Achiever's Award for Literature for her book "A Tribute to the Past" judged by Chris Orsman. She is featured in an article in the People section of this issue. We also print a poem by Cris Orsman, Valeries's judge, which was commissioned by the Royal Society of New Zealand who honoured Professor Maurice Wilkins, now aged 86, at a ceremony in Christchurch recently for his lifetime of achievements.

June Ombler, Editor
207 Forbury Road, St Clair, Dunedin.
Phone: (03) 455 8813 Email: jombler@xtra.co.nz

FROM THE PRESIDENT'S DESK
BY Anthony Haas

Retina New Zealand has one member, Dr Nancy Higgins, elected as a director to the Royal New Zealand Foundation of the Blind Board from 1 May 2003. It is desirable that the Retina executive, she and other board directors develop a dialogue on current and innovative programmes of interest to both organizations.

Other current and former Retina members Jonathan Godfrey, Allan Jones, Kaye Newton, Maaka Tibble and M. Asgarkhani showed by standing that Retina offers capability at a number of levels.

Opportunities for Retina candidates and preferred Retina candidates will be available if the RNZFB chooses to co-opt supplementary skills, and in annual elections as RNZFB directors retire by rotation.

Jonathan Mosen, as the new chairman of the RNZFB said of the new governance arrangements - it is difficult to convey in words the sense of occasion and history that was felt by those involved in the events of 30 April 2003. "That said, the Board of directors is mindful that there is much to do, and now the real work begins".

His report on the first meeting said that at its next meeting, which will take place on 29 and 30 May, directors intend to spend some time discussing the role of a governing board, so that all directors are given a refresher on the differing roles played by the governance and management arms of the organisation. It is also intended that the Board be briefed by divisional managers on the range of services, hear from consumer organisations, and begin a work plan for the issues requiring the Board's attention. He also said former trustees would be only too happy to provide advice. Gordon Sanderson, Michael Turner and I are amongst those former trustees associated with Retina New Zealand.

The Board has also set Friday 31 October at Awhina House in Auckland for the meeting of members, not as an annual general meeting, but to report on the Foundation's activities in the financial year ending 30 June 2003.

The Basic Retina Story

Retina New Zealand is a consumer organization, and special interest group of RNZFB, with a core interest in the retinal conditions of people who in fact are the majority of RNZFB members and a dispersed population of non members - people who are sight impaired. It is also interested in services for people who are blind, and for people whose blindness could be avoided.

Retina New Zealand has established programmes on which it advocates, and these and innovations need now to be presented in a new environment.

Retina has just tabled its conservative budget with RNZFB for the July 1 2003-04 year to enable it to continue its modest domestic and international

infrastructure, its core peer support and public education and its innovations in blindness prevention.

Retina, through its research budget for fighting blindness, and through its targeting of the public health vote for it and RNZFB, illustrates its will and capacity to grow and diversify income sources.

Blindness prevention

The Pacific Peoples Blindness Prevention Programme has been developed not only to provide a necessary service to help reduce future demand for RNZFB services, but also to show the potential in partnerships for Retina, RNZFB and others. Blind members of RNZFB clearly want someone else to pay for much of blindness prevention, suggesting reasonably that it should be a charge on government's public health vote. Retina has brought the Ministry of Health into negotiation for a contract that should fund the pilot Pacific initiative. It is a model to help the Foundation strengthen its prospects for government blindness prevention and other contracts.

RNZFB electoral system

Political systems have conventions as well as constitutions to help people have their voices heard.

Attitudes brought to Retina's attention since the RNZFB election suggests attention needs be given to

-Getting RNZFB directors with a mix of skills, including financial and corporate influence, public profile, networks and support for blindness prevention as well as those whose careers and lives are dominated by blindness.

-Meeting the needs of elderly Foundation members who are relatively new to the Foundation and may well be looking for understanding and assistance to adjust to changed circumstances rather than being that bothered by who runs the show.

-RNZFB's long term outlook if members continue to look amongst themselves for rehabilitation ideologies, financial security and advocacy strategy.

-Openness of the democratic process. Information and opinion needs to flow between members and their elected representatives.

-Increasing participation in the democratic process. About one quarter of eligible members voted in this first election for RNZFB directors. The RNZFB's stakeholder relations committee, led in the last board by the new deputy chair Don MacKenzie, has plans to foster participation.

-Costs of the democratic process. Sufficient financial provision must be made in future budgets. The voting process alone requires mail to every member (circa 12500) at least twice - once in the call for nominations and once in the voting process itself. This will be an annual requirement in future as elected directors retire in rotation. In addition the preparation of election communications in special formats places a heavy demand on the staff involved because of the tight time limits laid down in the constitution. Further costs are incurred by paying return postage on votes and in the external counting process that has been used on this occasion.

-Benefits of the process to advance objectives. Retina and RNZFB, their members and potential members, have a vested interest in each other's success. We should pull together to meet the needs of the blind and the sight impaired - and help prevent others' blindness.

TWO NEW MEMBERS APPOINTED TO RETINA'S SCIENTIFIC & MEDICAL ADVISORY BOARD (SMAB)

The Executive of Retina New Zealand is pleased to announce the appointment of two new members to its Scientific & Medical Advisory Board (SMAB). They welcomed Dr Andrea Vincent at their Planning meeting in April. Dr Toni Marks is well known to many members as he has visited our branches in the past as a speaker. He also helped to train the Society's Peer Support team

when it was established.

We print below a short C.V. provided by each of them

DR TONI MARKS:
Aged 58 I am a Psychiatrist living in Wellington and now working entirely in private practice. After my medical training in Dunedin and psychiatry training in Australia I returned to Wellington almost 30 years ago. For many years I worked at Wellington Hospital then gradually established my private practice while working at Hutt Hospital where I last worked last year. My psychiatric work involves me in assisting and treating people with psychiatric disorders and also a great deal of other work including Court work, other Medical Legal work and my keen interest in how people adjust to difficulties such as injuries and long term illnesses.

I have four children and in September 2002 my daughter and her husband had twins who are my first grandchildren. My first wife died of Multiple Sclerosis, becoming severely ill after 25 very happy years together. Almost 2 years ago I remarried a wonderful woman and we live together in Central Wellington.

As well as my busy working life I have been busily involved in my new romance and keen interest in reading, music, live theatre and fishing. My wife who is Australian and I travel to Australia to be with her family, enjoy hot weather and swimming and we occasionally visit my oldest son and his wife who live in Edinburgh.

Over the years I have had a great deal of excellent assistance from the Blind Foundation which started when Bob Daisley taught me to use the long cane in 1976. I have Retinitis Pigmentosa so that I had tunnel vision and no night vision when I was younger. My central vision disappeared after I had returned to Wellington and established myself as a psychiatrist at Wellington Hospital. Over the years I have enjoyed being a home handyman but nowadays prefer to do other things.

I hope that I can usefully contribute to the Advisory Board and look forward to working with Retina New Zealand.

DR ANDREA VINCENT:
After completing my Ophthalmology training in Auckland and Hamilton, I worked as Senior Registrar for a year at the Royal Victorian Eye and Ear Hospital in Melbourne, Australia. I had the opportunity to spend some time with Robyn Guymer, a Medical retina specialist who has a specific interest and an ongoing research with inherited retinal dystrophies. I also undertook some research at the Walter and Elisa Hall Institute, in which we looked at mice, trying to establish a model for a retinal dystrophy.

The next two years were spent at the Hospital for Sick Children in Toronto, Canada, working with Drs Elise Hoon and Alex Levin who run the Eye Genetic Programme.

Half of this time was spent in the lab undertaking molecular characterisation of Inherited eye diseases, predominantly anterior segment dygenesis and glaucoma. The remaining time was taken up with clinical duties in the Genetic eye clinics and undertaking clinical research, including extensive electrophysiology testing.

I returned to New Zealand in June 2002 to take up the Tutor specialist position at the Eye Department at Auckland Hospital. I am slowly working towards establishing an Eye Genetic service in conjunction with the University Ophthalmology Department run by Professor Charles McGhee, and the Department of Clinical Genetics run by Dr Ingrid Winship. Among our aims will be establishing research undertaking molecular characterisation of genes involved in genetic eye diseases, to further our understanding of these diseases which may ultimately lead to improved visual outcomes for affected individuals.

RETINA NZ EVALUATION OF EDUCATION PROGRAMME SURVEY FINAL REPORT
From Paul Gibson, 9 November 2002

One hundred people were randomly selected from the member database and contacted by phone to answer survey questions. We print below the sections suggested by Paul Gibson. If any respondents to the survey would like to read the full 29 page document, please contact National Secretary Janet Palmer to ask for it in your chosen format. The Executive Committee at its Planning Meeting in April agreed to review progress on the recommendations in six months time. EDITOR.

1.Summary and Key Findings

The "A Family Affair" and "About Macular Degeneration" booklets are highly effective, and two thirds of survey respondents have looked at them. There was no suggestion to amend content, except "About Macular Degeneration" could have technical language clarified. Both could use larger print and clearer font.

One third of respondents have come across Retina NZ representatives in the media, and they are rated as effective.

One third have looked at the website (or have had family members look at the website) and it was rated least effective of the Retina Association programs. It could be made more user friendly and accessible for both sighted and blind users, and content could be updated more regularly,

Two thirds of respondents are aware of peer support and blindness prevention programs. Eye professionals and others working in the area (volunteers) were more likely to be aware of all Retina programs and activities.

Two thirds of respondents suggested organisations Retina NZ should be working with.

One quarter of members first found out about Retina NZ through the RNZ Foundation of the Blind, one third through other eye professionals, and the rest via friends, other networks, and the media.

Almost all respondents identified as Pakeha/European and the majority were older women.

11.Summary Table

Please read out table attached to the newsletter document.

Appendix One: Recommendations

Recommendation 2.1: That sections 1 (summary and key findings) 11 (summary table) and Appendix One (recommendations) be circulated to all retina members with a mailout.

Recommendation 3.1: That Retina clarify with RNZFB staff privacy issues and access to the database for future research projects.

Recommendation 3.2: That Retina continue work with RNZFB and eye

professionals publicising Retina's work.

Recommendation 3.3: That Retina reinforce to eye professionals the need for appropriate communication, especially when communicating a new diagnosis.

Recommendation 4.1: That the Retina website meet accepted accessibility standards (see www.w3c.org).

Recommendation 4.2: That the Retina website be updated more often, and include membership information and key publications such as "A Family Affair" and "About Macular Degeneration".

Recommendation 5.1: That "A Family Affair" be re-released to the membership and new members in a very large, good contrast font.

Recommendation 6.1: That "About Macular Degeneration" be re-released to the membership and new members with plain language explanations of complex concepts in a very large, good contrast font.

Recommendation 7.1: That Retina continue publicity in the mainstream media

Recommendation 7.2: That the Retina newsletter continue.

Recommendation 8.1: That Retina promotes awareness around being partially blind.

Recommendation 9.1: That the list of organizations and initiatives be looked at by the Retina executive.

Recommendation 10.1: That Retina target under-represented communities in membership campaigns, especially Maori and Pacific people.

ACCESS TO AUDIO BOOKS
by Camille Guy

It took me some time to adjust to audio books after a lifetime of reading. My loss of central vision due to myopia and wet MD in both eyes was sudden, and there was a dismal period of some months before I had access to a talking book machine and tapes.

I can see now that for somebody so dependent on reading, it would have been a good idea to plan for this eventuality, but denial is a powerful thing.

Several years on from that difficult time I have nearly forgotten that lifetime habit of gulping whole sentences, paragraphs, pages of print. But I have not had to give up the delicious habit of losing myself in a story. Audio books might be slower, and compared to books in print the selection is sorely limited, but the pleasure of enjoying near direct communion with another's mind is still available to me. In some instances that communion is even enhanced.

Take Stephen King's book called On Writing. It is a mix of autobiography and his thoughts on the craft of writing. The CD version is read by the author himself. By the end of it, I felt I not only knew the man, but that he must know me too. After all, he had been talking to me for days.

That may be one reason why sighted people listen to audio books too. That, and the way you can listen while driving, cooking, or ironing. Insomniacs can listen through headphones and not wake up their partners.

But that raises one drawback to audio books: the tendency to fall asleep to the sound of the reading voice. I don't know whether it is a hangover from infancy and being read to sleep, but one blind friend will only read books in Braille since audio ones make him nod off and lose his place.

After a faltering start the commercial production of audio books is now flourishing. Most public libraries hold collections, and the "print disabled" (which includes the blind or vision impaired) can usually borrow them free of charge. These audio books come in cassette tape or CD form. My library (Auckland City) holds no separate catalogue for audio books. To know what is available for loan I have to take a sighted person into the library with me.

My other source of audio books is the Royal New Zealand Foundation of the Blind's talking books library which holds around 7000 recorded titles. It might sound a lot, but there are over 12,000 members eligible to borrow these books. And compared to Auckland City Libraries' collection of over one million print books, it is tiny.

By using a four track recording system, the RNZFB can pack six hours listening onto one cassette tape, which has to be listened to on a special and rather clunky machine. These books have mostly been recorded in the Foundation's production studio. They are narrated by a team of carefully selected readers whose unaffected clear voices don't grate, and only minimally interpose between author and listener. Books are never abridged and nothing is ever censored. Footnotes get read aloud too.

Foundation librarian Greg Morgan says one strength of the RNZFB collection is it includes nearly three hundred New Zealand novels, which are unlikely to be commercially recorded. There is also more non-fiction.

In my more Zen moments I don't mind having access to such a limited range of books. After all, a lot of life's stress is about too much choice. But about the time reading was becoming impossible for me I happened to be in London. I did a tour of the largest book shops there, checking out their audio books.

It was a depressing experience. Far from the vast range of exciting and cutting edge titles I had envisaged, I faced the usual: all those classics that are in the public domain and pose no copyright problems, like Dickens, Austen and Shakespeare, plus every British actor's personal memoir. There was just a scattering of contemporary authors, mainly fiction blockbusters. Many books are abridged. I think the situation is better in the United States, but I have not personally checked this out.

Browsing the adult audio book section of one major Auckland book store, I began to discern a pattern. Of eight full bookcases, a quarter were classical and contemporary fiction, ranging from Homer to P.D. James. Another quarter were genre fiction, mainly thrillers, sci-fi and horror. Not much romance fiction. The remaining shelves were filled with a tiny sample of most other book categories. Anything self-motivational or inspirational was well represented.

Like my library, this shop holds no separate catalogue of its audio books. CDs and tapes are not shelved separately. The manager tells me it is an awkward time for audio book production. Only the big sellers are carried in both formats. He thinks it will be a while before the technology of file-sharing or digital downloading affects audio books.

Some blind whiz kids are already doing well with digital books available on a subscription basis from the web. A few U.S. publishers produce MP3 CD versions of their audio books as well as cassettes and regular CD's. The MP3 discs can be half the price of the other formats, so it is worth getting your head around this technology if you can.

For serious seekers of audio books it is best to scan the internet for catalogues. Be prepared to pay anything from NZ$25 to $200 for each book.

THE DIFFERENCE BETWEEN ROD CONE AND CONE ROD DYSTROPHY
From Associate Professor Gislin Dagnelie PhD, Lions Vision Research & Rehab Centre, Baltimore, USA

"Real RP" is a rod-cone degeneration. This means that it is caused by a genetic defect that affects the rods, and only indirectly affects the cones. In cone-rod degeneration, the genetic defect is in the cones, and the rods only suffer secondary damage. Because the rods are responsible for night vision, and do not occur in the very center of our retinas, the symptoms of "real RP" are primarily night vision loss and loss of vision in the periphery. Central vision, both sharp detail and color, can be spared for a long time.

In contrast, when the cones are affected primarily this leads to loss of central vision. The process is often slow, and visual acuity loss may only develop gradually. The cones are also responsible for color vision, and therefore one of the earliest symptoms of cone-rod degeneration is abnormal color vision. However, the distinctions are not always so clear-cut, apparently because some defects have more severe indirect effects than others.

As you can imagine, a rod defect with severe side effects on the cones is hard to distinguish from a cone defect with severe side effects on the rods. Clinical tests such as visual fields and the electroretinogram can often be used to answer questions about the primary defect, but only in a relatively early stage of the disease.

PEOPLE

RETINA MEMBER VALERIE RICHARDS WINS BLIND ACHIEVERS' LITERATURE AWARD FOR 2002
By June Ombler

Long time Retina member Valerie Richards, aged 66 (who has two sons and three grandchildren) of Ashburton has won the Blind Achievers' Literature Award for 2002 with her recently published book "A Tribute to the Past". The award was presented to her by the Governor General at a ceremony at Government House last December. Chris Orsman, the judge, said "Valerie's family history is a most impressive undertaking, combining a wealth of visual and historical material". "The book clearly shows passion and determination at work. It is a gift to others - not only to her extended family but those who feel as I do, that much of our real history lies in the faithfully researched detail of 'ordinary' families".

When living in Dunedin, Valerie learned she had Usher syndrome Type II and was registered as a member of the RNZFB in 1993. Hearing impaired from early childhood, the acquisition of a hearing aid in 1986 made a huge difference in her life. She could hear high sounds like birds singing and the piccolo in an orchestra for the first time, and many other sounds taken for granted by those with good hearing. Although her loss of sight was totally unexpected, she did not allow this new disability to overshadow her will to succeed in life.

Pianoforte was a special enjoyment from a young age and after marriage to Keith in 1961, she continued this interest. While living in Hamilton in the early 1970's, she gained the ATCL and LTCL and performed as a solo pianist and accompanist in a large number of entertainment and concert venues in and around Hamilton. A particular highlight was being pianist for a choral presentation of Handel's Messiah and accompanying well known blind singer, Pamela Looker of Hamilton in her rendition of the aria 'Rejoice'. Through these years of pianoforte playing, she was unable to hear the top register of the piano because of deafness. After becoming a member of the RNZFB, the Dunedin RNZFB Thursday Singers benefitted by having her fine singing voice to lead the alto section.

Undaunted by the diagnosis of Usher syndrome, Valerie went on to win awards in three new fields of endeavour. She learned porcelain doll making and entered six dolls in the Dunedin Doll Extravaganza in 1994. All won top honours, her French reproduction antique doll, an FG - Claudette, winning the Best of Section Award rosette.

After redundancy from the BNZ in the early 1990's, she became an Avon Sales Representative and built up a large client base. In the following few years, she won a number of awards including several President's Club Mrs Albee Awards in recognition of her "dedication, service and sales leadership".

Having moved to Invercargill, she still had some useful sight left and in 1998 decided to research her husband's family history. A local phone call started her on the trail and in mid 1999 she and Keith toured New Zealand to find Richards' family relatives. Keith photographed many old photos and records while Valerie did interviews. As the Richards' New Zealand history began in Invercargill, she visited the local library, viewed newspapers, visited museums in Southland and the LDS Genealogical library, through which she ordered films of old registers from overseas. "I found that with determination, perseverance and a willingness to accept help from others, a person with limited sight could achieve a great deal", says Valerie. A publisher was found and in September 2002, she had the thrill of holding her 379 page book and could appreciate it visually.

Using a magnifying glass on a stand and a larger weave than normal, she learned Hardanger embroidery and then worked a large cloth to her own design. She has also learned braille, and, with total sight loss in her left eye and a very small area of vision in the other, has recently done the Foundation's touch typing course from tapes. She and Keith now have a new interest - a recently acquired motor home, which will give them an opportunity for new adventures.

"Life is an adventure" says Valerie. "It is there to be lived to the full. Deafness and sight loss might slow us down but it doesn't mean we cannot achieve as good, or even better than anyone else. We all have skills that we are good at and sometimes we have hidden skills just waiting in the wings. We should not be hesitant to try something new - the results could be simply amazing!"

DUNEDIN MEMBER REACHES HIS 100th BIRTHDAY

Congratulations to Bill Norris of Dunedin who celebrated his 100th birthday in April. Bill still plays bowls and sings with the Thursday Singers, the Foundation's Dunedin choir.

DON BIRNIE

It is sad to report the death of Don Birnie, aged 87 of Wellington Branch at the end of April. Don was a respected elderly gentleman who was well known in blindness and disability circles. He was a committee member of Retina NZ and ABC NZ and a Vice President of DeafBlind Inc. and was active in the Disability Christian Fellowship group. Our thoughts and sympathies go out to his children Ruth, John and Esther.

NATIONAL DISABILITY INFORMATION SERVICE LAUNCHED - ww.weka.net.nz

The arrival of Weka means that people with disability will be able to go to a website that has special access keys incorporated. This new national disability information service was launched by the Minister for Disability Issues on Monday, 28 April, 2003.

Funded by the Ministry of Health, the service aims to provide one point of contact for authoritative, up-to-date, generic disability information. The service is free to users, who can access information by free phone, email, fax, website, by speaking to an information consultant or using a computer at the local Disability Information Centre.

Weka (What Everybody Keeps Asking - about disability information) will be a simple, accessible 'one stop shop' for 'generic' disability informationn. Weka is a joint initiative of Enable NZ [formerly the NZ Disabilities Resource Centre] and the NZ Federation of Disability Information Centres.

"As New Zealand's 674,000 people with disabilities is one of our audiences, accessibility was obviously a crucial requirement. All documents on the web site can be read aloud by screen reading software, and the whole site can be navigated solely by keyboard", says Liz Goldie. "For the first time, good up-to-date information will be available from one source, accessible just about anywhere, however and whenever the user wants it.

Launching Weka, Minister Dyson said that the service is an important step towards a more inclusive society. The Government recognises that access to high-quality information is vital for people with disabilities to increase independence and enjoy a better quality of life. We also recognised the need to ensure that all information provided is validated, up-to-date, comprehensive to need and accessible in every sense of the word.

"Weka is a vital link in the information loop. Its purpose is the provision of a consistent nationally networked disability information service. It will benefit people with disabilities, whanau, carers, medical professionals and the wider public".

WOULD YOU LIKE TO JOIN A CHAT ROOM? HERE'S HOW TO DO IT

The Foundation Fighting Blindness would like to invite you to join your peers in an online chat session every week. This is an open forum for you to share your thoughts and concerns with others.

To enter the chat room, you will need to become a member of our site. Registration is fast and easy.

Fill out the form located at

http://www.blindness.org/forms/register.asp and hit submit

Log into the site, http://www.blindness.org/login/, using the user name (your email address) and password you have just created.

Go to http://www.blindness.org/chat/ and click on the appropriate chat room link to enter.

Stargardt Chat Room

Mondays 7:00 - 9:00 PM EST

Macular Degeneration Chat Room

Tuesdays 7:00 - 9:00 PM EST

Retinitis Pigmentosa Chat Room

Wednesdays 7:00 - 9:00 PM EST

Usher Syndrome Chat Room

Thursdays 7:00 - 9:00 PM EST

Please feel free to forward this email to a friend. See you there!

EDITOR's NOTE: For those of you who can and wish to access this Chat Room site, below are the NZ times converted from American Eastern Standard Time that it will be available -

Stargaardt Chat Room - Tuesdays 11.00 am to 1.00 pm.

Macular Degeneration Chat Room - Wednesdays 11.00 am to 1.00 pm.

Retinitis Pigmentosa Chat Room - Thursdays 11.00 am to 1.00 pm.

Usher syndrome Chat Room - Fridays 11.00 am to 1.00 pm.

MAKING WAVES - A POEM
BY CHRIS ORSMAN

Commissioned by the Royal Society of New Zealand in

honour of Maurice Wilkins

Light diffracted on a bedroom wall

at 30 Kelburn Parade, making waves

through a cloth blind, circa 1920;

outside, pongas and cabbage trees

lie just within memory's range,

a pattern and a shadow.

The silence here is qualified

but it draws you out, four years old,

or five. The world's a single room

where fronds and wind tap a code

against the window pane.

Next up you're wild, sprinting down

a helix of concrete steps

from the hills to the harbour.

Or you're leaning into a gale

commensurate to your incline

and weight; the elements support you,

and the blustery horizon

is fresh with new information.

And now the landscape changes

from island to continent to island again,

and there's a sea-change as we fire off

certain rays to form a transverse

across your history.

Acclimatised,

you wintered over in laboratories

and made a virtue of basements

and arcane knowledge; you found

a scientific silence or a calm

in which things are worked out

at a snail's pace, a slime

stretched and scrutinized between

forefinger and thumb to yield

a feast of the truth, or a field

ploughed with frustration, if that

is where our guesses land us.

For Science is a railway carriage

rocking with big ideas, sometimes

stalled on the sidings or slowed

on branch lines near rural stations.

And still the whole is too huge for us

to comprehend, one metre long,

wrapped around each cell,

unread until it's unwound,

the scarf and valence of our complexity,

from which we derive our unique timbre

to say: Well done! Well done!

To an amateur an x-ray plate

looks like an old fashioned

gramophone disk: yet it plays

scratchy music of the spheres,

jazz of an original order.

Or perhaps it's the ground-section

of a Byzantine Cathedral, or a basilica

of double colonnades and semi-circular apse

and who builds upwards from that

to discover the grand design? Who

constructs with only a floor plan

to find the elevations?

Those who are neither architects nor masons

but quiet archaeologists of the unseen

hand and mind of God, digging upwards

to the exquisite airy construction

of the double helix. Gifted clumsiness?

Genius? You are there at the start of it,

a chiropractor of the biochemical,

clicking the backbone of DNA into place.

NOMINATIONS REQUIRED FOR SOCIETY PRESIDENT

Rule 7(a) of the Constitution of Retina NZ states that "The President shall be elected by the membership through a postal ballot to be conducted prior to an Annual General meeting for a two year term of office and may serve no more than two successive terms of office".

Our President, Tony Haas, will have completed his two terms of office at the next Annual General Meeting to be held in September.

We now require nominations for a new President to take over from him and a nomination form is enclosed with this newsletter. All nominations must be signed by the Nominator, the Seconder and the Nominee as accepting nomination, with the date of acceptance. They must also include a Curriculum Vitae of the person nominated, not exceeding 500 words.

Please return the nomination form enclosed with this newsletter. It must reach the National Secretary, Retina NZ Inc. at P.O. Box 27-177, Wellington by 5.00 pm on Friday, 25 July 2003. After that, their C.V.'s will be sent to all financial members with a voting paper, to be returned to the National Secretary.

MEMBERSHIP SUBSCRIPTIONS ARE NOW DUE

Membership subscriptions became due as at 1 April 2003 for the year 1 April 2003 to 31 March 2004. With this newsletter, you will find a Membership Renewal Form which we ask you to complete and return with your subscription to the Natonal Secretary, Retina NZ Inc., P.O. Box 27-177, Wellington, as soon as possible. Please note the Database Information Form is on the reverse side of the Renewal of Membership Form.

CHANGE OF POSTAL OR EMAIL ADDRESS

Would any member who changes his/her postal or email address please advise the National Secretary, Retina NZ, P.O. Box

27-177, Wellington, phone (04) 476 7329, or email retinanz@ihug.co.nz so that you can continue to receive your newsletter.

RETINA NEW ZEALAND INCORPORATED NOMINATION FORM FOR POSITION OF PRESIDENT

We, the undersigned, being full financial members of Retina New Zealand Incorporated (pursuant to Rule 5) of the Constitution hereby nominate:

Full Name:

for the position of President.

Pursuant to Rule 7. a) of the Constitution, the term of office for the position is two years. The President may serve no more than two successive terms of office.

Proposed by:

Seconded by: .

I, the undersigned, declare (pursuant to Rule 5.a) of the Constitution, that I am a full financial member of Retina New Zealand Incorporated. I hereby accept this nomination. On accepting this nomination, I acknowledge it is mandatory that my Curriculum Vitae be circulated with the Ballot papers.

Nominee's Acceptance:

Date:

REMINDER:

a) Nominations close and must be received by the National Secretary no later than 5.00 pm, Friday 25 July 2003 (P.O. Box 27-177, Wellington).

b) A Curriculum Vitae not exceeding five hundred (500) words must accompany the nomination form.

 

RETINA NEW ZEALAND INC.

P.O. BOX 27-177, WELLINGTON

MEMBERSHIP APPLICATION/RENEWAL

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OCCUPATION: (Optional)

MEMBERSHIP: Waged: $10.00 Unwaged: $ 5.00

Donation: $

(Donations of $5.00 or more are tax deductible)

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I attach Cheque No for the sum of $

made out to RETINA NEW ZEALAND INC. for my subscription for the year commencing 1 April 2003.

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NEW MEMBERS OR MEMBERS WHO HAVE CHANGED THEIR STATUS IN THE DATABASE INFORMATION FORM, PLEASE TICK RELEVANT LINES ON NEXT PAGE.

DATA INFORMATION FORM

The information on this page will be stored on our data information file and will not be released to anyone except an Officer of the Society.

PLEASE TICK IN THE BRACKETS ON THE LEFT HAND SIDE OF THE PAGE THE

INFORMATION THAT APPLIES TO YOU.

I have Retinitis Pigmentosa (RP)

I have Usher syndrome (US)

I have Macular Degeneration (MD) other than ARM or Stargardt disease

(State what)

I have Age-related Maculopathy (ARM)

I have Stargardt disease (ST)

I have Diabetic Retinopathy (DR) I have another retinal degeneration

(State what)

I am a parent of a child with one of the above:

(State what)

I am an ophthalmologist or scientist

I am an optometrist

I am a healthcare or RNZFB professional

I am a friend / family member

Other (State eye condition not covered by a retinal disorder, e.g. spontaneous retinal detachments or glaucoma).

REMARKS:

 

Program	Effectiveness (1 high; 2 effective 3 low)	% looked at/ aware of
Website	2.2 (least)	33%
A Family Affair	1.5 (best =)	61
About MD	1.5 (best=)	58
Media	1.8	30
Peer support		70
Prevention		69

 

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 ISSUE IS FRIDAY 15 August 2003.