Retina New Zealand Newsletter November 2011 No 51
Charities Commission Reg No 23240
A Member of Retina International
Important Notice
If you are receiving this newsletter in email format please note that the membership renewal form is attached to the email. If you are receiving the newsletter on CD the renewal form will be posted to you in print shortly. Please complete and return to us as soon as possible. If you subscribe to the Retina NZ newsletter from overseas please ignore this notice.
1. From the Editor………………………………………... 2
2. From the President’s Desk…………………………... 3
3. AGM report………………….……………………...…….. 4
4. Tapes being replaced by CDs……………………...….. 4
5. Research……………………………………….….………. 5
6. AMD likely to trigger depression……………………… 5
7. Oxford University trials new glasses………………… 6
8. Studentship Research Award……………………...….. 7
9. Audio Description adds to TV, DVDs, theatre……… 7
10. Farewell to Susan……………………………………… 10
11. Youth pages………………………………….………….. 11
12. Laser toys and camera flash dangers……..……… 14
13. Calling a cab made easier……………………...……. 15
14. Book Review……………………………………….…… 16
15. Notices……………………………………………...... 18
1. From the Editor
This newsletter has been produced by me, Camille Guy and my
sighted friend John Wishart. Although we are both trained
journalists, we are quite new to this Retina task, so let us know
about any errors you notice or improvements you would like to see.
I have been a Retina member since first losing most of my “useful
vision” through retinal haemorrhaging due to high myopia. That
was around ten years ago.
My adjustment to sight loss was made easier by the wonderful
support received from fellow Retina and RNZFB members, so I am
keen to support others who might still be in the early stages of this difficult transition.
I know what helped me most adjust to sight loss was both acquiringinformation about retinal disorders and getting to know and enjoy a community of people dealing with similar problems. I am happy to report that with the aid of brilliant technology, my life is now
somewhat back on track.
But at the Auckland Film Festival this year I saw a movie about legaldoctor-assisted suicide in the US. In the movie terminally ill patientsand their families elected to go through this process. We got to
know the patient well. But most frustratingly, the description of theirdying and its aftermath were put in print on screen, with no
voiceover. So I was cheered to read Kiran’s account in this issue of “audio description”.
Also in this issue is a review of the latest book by neurologist OliverSacks who has had a melanoma in his retina and is losing sight. Hisbook about this focuses on the brain and vision. New Zealand
author Michael Morrissey brought the book to my attention, so we
are reprinting his review of it. To my knowledge the book is not yet available in audio, but I expect it will eventually be recorded.
All the best to readers for the festive season and we hope you enjoy a happy summer.
Camille Guy
2. From the President’s Desk
As a member of Retina New Zealand, you may well be familiar with one of our key objectives as an organisation promoting and supporting the quest for treatments for retinal disorders. Probably not as
well known across our membership is the fact that many of you
have generously contributed financially to our research account –
the account which contributed $10,000 recently to help establish thedatabase for New Zealanders with inherited retinal disorders.
With the kind assistance of a long time friend of Retina New Zealand,Associate-Professor Gordon Sanderson from the department of
Medicine at Otago University, we now have agreed on regulations
and guidelines to be used to distribute the annual earnings of our
research fund. Commencing in 2012, Retina New Zealand will
offer a $2,500 Summer Studentship to an undergraduate student
undertaking a summer research project in a field related to
advancing knowledge that will lead to better prevention, diagnosis and treatment of retinal disorders.
It is our hope that students completing undergraduate programs in medicine, nursing, optometry and other health-care professional
programmes, by being involved in retinal research, will consider
specialist postgraduate training in ophthalmology and optometry
which will ultimately contribute to enhanced healthcare for us all.
Associate-Professor Sanderson and I look forward to announcing
our first successful recipient and presenting their work in this
newsletter and in person at our 2012 AGM. You can read more aboutthe Studentship elsewhere in the newsletter and we are looking to
everyone in our networks to spread the word about this opportunity.Any assistance with this or suggestions of where we should
advertise further would be appreciated.
Of course being our last Newsletter in 2011, it just leaves me room
to thank you all for your support and continuing confidence in our
organisation and wish you the warmest of seasons greetings.
As you tuck into your turkey and think of Quade Cooper, your
slaughtered lamb and think of Robbie Deans and remove your
ham-strings and think of Kurtly Beale, do spare a thought for our
Retina Australia friends who look forward to welcoming us to their biennial conference next year – Sydney in October!
Best wishes, Fraser Alexander: President
3. Annual General Meeting report
Around 60 members and supporters attended the AGM of Retina NZ in Tauranga on August 27. Some came from as far as Palmerston
North, Tokoroa, Hamilton, Matamata and Rotorua.
After the usual formalities and roll call the president and treasurer
presented their reports. Resolutions included retaining membershipsubscriptions at the present levels. Election of executive was
followed by a report from Fraser Alexander on his attendance at oursister organisation in the United States - the Foundation Fighting
Blindness. The Foundation celebrated breakthroughs, progress
and hope in retinal research during its VISIONS 2011 national
conference this year.
Apart from the inspiring medical and scientific content, Fraser
covered information gleaned in the leadership, technology, coping and employment sessions along with an update on what Retina
International, our worldwide umbrella organisation, is doing to
facilitate the earliest possible worldwide availability of effective
cures and treatments for retinal disorders.
After lunch, Minnie Baragwanath, chief executive of the Be Institute,spoke to us about her organisation. It is a social change enterprise that aims to inspire and enable a 100% accessible society for all
New Zealanders. For the past 10 years, Minnie has worked in the
disability sector advising the former Auckland City Council. Her
collaborative insight and open leadership style has brought
together Auckland Council, AUT and ADHB as founding partners to help launch this new enterprise.The Be Institute has now developeda partnership with the Ministry of Social Development to lead the
way in creating accessibility for the whole of New Zealand.
Tauranga ophthalmologist, Dr Clive Straker, spoke on Macular
Degeneration and other retinal disorders - What is happening at the back of the eye? He explained how to best cope with the
condition.The following day the executive and observers met for
intensive reviewing and planning to ensure the continuing wellbeingof Retina NZ.
4. No more cassette tapes - it’s CDs from now on
Subscribers who usually receive their newsletter on audio tape will this month be posted a CD instead. This is because the RNZFB,
which converts our newsletter into audio has finally gone digital.
The Foundation no longer uses cassette tapes. We hope all our
subscribers have access to a CD player. These discs should work
on any player. And the CD is yours to keep, so do not try to return it to the Foundation or to Retina.
If this is not convenient and you wish to change the format you
receive the newsletter in, please ring 0800 233 833 with details.
Remember, the newsletter is also available in print or in digital MP3 format which you can receive by email.
5. Research: Gene Therapy Trials begin
Trials have begun in the UK on gene therapy for a retinal disorder.
In an update from ground-breaking UK scientist, Professor Robin
Ali and his gene therapy research team at The Institute of
Ophthalmology in London, Professor Ali writes in “Looking
forward”, the quarterly magazine of our UK sister organisation RP
fighting blindness
“As a result of major advances over the last two decades, gene
therapy for retinal disorders is now a realistic prospect. We are
currently conducting the world’s first ocular gene therapy trial for
Leber’s Congenital Amaurosis and have established proof of
principle for gene therapy in inherited retinal disease. We have also demonstrated proof of concept of gene therapy in animal models of several other forms of LCA, and developed a therapeutic pipeline
for at least 11 forms of early-onset severe retinal dystrophies
including 9 of the 16 different forms of LCA.”
“Over the next 5 years we intend to build a programme of clinical
trials for various forms of retinal dystrophy. However, before we areable to advance to clinical trials we first need to design trial
protocols, secure regulatory approvals and perform further efficacy and toxicity studies using vectors manufactured to pharmaceutical standards. Our immediate priority is to secure the core expertise in gene therapy clinical trials that we have established over the last
five years to maintain the momentum generated by our first clinical trial,” said Prof. Ali.
6. AMD likely to trigger depression
A study investigating depressive symptoms and quality of life in
people with age-related macular degeneration has concluded that
psychological and functional outcome measures are reduced in
people with AMD. Earlier recognition and treatment of depressive
symptoms in people with AMD may be crucial to maintaining qualityof life in this group. The study at the School of Optometry and
Vision Science, University of New South Wales, Australia involved
145 AMD participants (mean age 78.0) and 104 age and
gender-matched controls (mean age 78.1). 44.4% of people with
AMD had clinically significant depressive symptoms compared to
17.5% of controls.
7. Oxford University Scientists Prototyping Special Glasses
Using video cameras, position detectors, face recognition and
tracking software, the team is working on a normal-looking pair of
glasses that could help those who have just a small area of vision
left, have cloudy or blurry vision, or can’t process detailed images. They would be suitable for common types of visual impairment suchas age-related macular degeneration and diabetic retinopathy.
“We want to be able to enhance vision in those who’ve lost it or who have little left or almost none,” says Dr Stephen Hicks of the
Department of Clinical Neurology.
“The glasses should allow people to be more independent - finding their own directions, and spotting warning signals.” The glasses
have video cameras mounted at the corners to capture what the
wearer is looking at, while a display of tiny lights embedded in the
lenses feed back extra information about objects, people or
obstacles in view.
Different colors could represent people or objects, and brightness
indicate how close an object is. A pocket computer recognises
objects in the video image or tracks where a person is, driving the
lights in the display in real time.
“The glasses must look discreet, allow eye contact between people and present a simplified image to people with poor vision, to help
them maintain independence in life,” says Hicks. “These guiding
principles are important for coming up with an aid that is
acceptable for people to wear in public, with eye contact being so
important in social relationships.”
The team is also working on including optical character recognition,allowing everything from newspaper headlines to barcodes to be
read. Hicks reckons the glasses could cost as little as £500 in the
UK. The team is planning a year-long feasibility study starting later
this year.
8. $2500 Studentship Researcher Award
Retina NZ would like to make its first $2,500 award to a 2011-2012
Summer studentship researcher and requests that applications be
sent to: by 15 December 2011.
Application Process:
a.Please provide one page summarising what the aims of the
research are (in the form of a question): e.g. how many Maori and
Pacific Island people go blind with glaucoma in New Zealand every year?
b. Please give a brief account of the methodologyto be used.
c. Please state why you are the right person to answer the research
question?. Detail your qualifications, research experience, support and supervision, equipment, facilities, etc.
d. Please attach your CV detailing relevant research or other
experience.
Recipient Criteria
a. You must be a NZ Citizen or permanent resident and carry out theresearch within New Zealand.
b. You are expected to report on your completed project in such a
way that encourages patients affected by retinal disorders to
financially support retinal research in New Zealand. Your reportwill use language understandable by non-medical, non-scientific
readers and listeners.
c. You will present at a Retina NZ AGM and conference following
completion of funded projects. Retina NZ will cover all related
expenses for this.
9. Audio Description: Additional narration for the visually impaired
When watching television, have you struggled to read the
background information sometimes shown at the beginning? Are
you curious about what’s going on during those silent scenes?
Or annoyed because you cannot read facial expressions?
Or have you just given up on live theatre because it’s difficult to
know what’s happening on stage and you don’t want to continually
interrupt your companion to ask?
Since March this year TVNZ has audio described limited television programs including all episodes of Coronation Street. Audio
Description applies to television, DVDs and theatre. It is additional narration to explain nonverbal details you might otherwise miss
such as facial expressions, body language, on-screen action,
costumes and scenery. The original soundtrack remains and the
audio description occurs during quiet moments.
Although an objective and succinct explanation of the non verbal
on-screen action is given, for practical reasons not all detail is
described.
As a recently introduced service in New Zealand, audio description is at present available on only a few shows. Here is how audio
description is used in TV programs, DVDs and theatre shows: