The Newsletter of Retina New Zealand Inc A Member of Retina International Autumn Newsletter May 2008 No 37
Important Notice: If you are receiving this newsletter on tape please note that the tape is yours to keep. When you have finished reading it you may retain it, give it away to friends or family, or destroy it. Please do not return it to the RNZFB or to Retina NZ.
1. Vision Impairment Expo 2. >From the Editor 3. Letters to the Editor 4. From the President’s Desk 5. Retina International 6. Snippet 7. Research: ARMD Identification of Deficient Receptor AMD Doubles Heart Attack and Stroke Risk Oxidative Damage Induced Inflammation Initiates ARMD 8. Retina NZ AGM 9. Ask the Ophthalmologist 10. Janet Palmer 11. Snippet 12. Coping Retina NZ Peer Support Service Up the Garden Path Adding Contrast to the Edges of Steps MS Word Plug In 13. Auckland Branch Meeting 14. Notices 15. Book Review
1. Vision Impairment Expo and Workshop Quantum Technology in partnership with local dealers Adaptive Technology Solutions and Zabonne are holding this first New Zealand Expo. Auckland-North Monday 19th May 10am-2pm at the Fairway Lodge, The Fairway Room, Argus Place, Takapuna.
Auckland-East Tuesday 20th May 10am-2pm at the Pakuranga Rugby Club, Montressors Lounge, Bells Rd, Lloyd Ellsmore Park, Pakuranga.
Rotorua Wednesday 21st May 10am-2pm at the Sudima Hotel, The Baycrest Room, 100 Eruera St, Rotorua.
Napier Thursday 22nd May 9.30am-1.30pm at the Napier War Memorial Conference Centre, The Ball Room, Marine Parade (opposite the Te Pania Hotel).
Wellington Friday 23rd May 10am-2pm at the West Plaza Hotel, The Dorset Suite, 110-116 Wakefield St.
Please call 09 836 3220 or 04 528 7600 to register for this event.
Quotes: If you have built castles in the air your work need not be lost, that is where they should be. Now put the foundations under them: Henry Thoreau
To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly: Henri Bergson
2. From the Editor
The executive committee of Retina NZ has been extremely busy making the changes necessary for the smooth running of the organisation. Of particular importance has been the revising and updating of our constitution to meet the requirements of the Charities Commission. Our thanks must go to our Treasurer, Kiran Valabh, who has put many hours of voluntary work over many months, and much thought and careful consideration into the necessary changes. If you would like a draft copy of the proposed constitution please contact Kiran on 09 360 6922 and a copy will be forwarded to you.
How many of you have suffered falls due to your vision impairment? A recent fall I had when my foot got caught in a hole in a footpath has made me aware that many of us need to explore preventative options both as our sight fails and we age. Constantly looking at the ground for danger does little for our posture, and puts increased pressure on ageing joints. The ACC and groups set up to support people with ageing recommend both Tai Chi and yoga as useful practices to help with balance and stability. One blind friend tells me she has not had a fall since joining a yoga class. I have just joined a Tai Chi class and hope this will help with my balance. It is difficult trying to see the movements with partial sight but I will persevere. If you are having falls I hope you will consider joining a class in your area.
Please note that the August issue of the newsletter will be a little late. Fraser and Christina Alexander and I will be attending the Retina International Conference in Helsinki to learn about the latest retinal research. We will report on this at the AGM and conference to be held in Hamilton on the 27th of September.
Please note that all the information normally on the inside page at the front of the print version of the newsletter has now moved to the last inside page. This has been done to make maximum use of the pages. Age-related macular degeneration is the focus of the research in this newsletter, with information on a breakthrough on treating dry AMD. I have included articles on Retina International, our Peer Support service, the new Loadstone GPS system, and how to install contrast on your steps to prevent falls. I have reviewed a talking book which I could hardly put down, Long Cloud Ride was great company during the many hot humid nights here in Hamilton this summer. Susan Mellsopp
3. Letters to the Editor
Dear Susan Mellsopp, This is only to tell you that the newsletter has been received, duly read, and greatly appreciated by us here in the Norwegian RP Association. You are doing a very fine job, and giving us ideas for items and articles which we may introduce also in our own newsletter in the sense that we can find similar material here.
In your last issue we enjoyed especially the article on Moorfields, the ‘snippet’ from China, the emphasis on humour, and the instructional article on the selection of a mobile phone.
Our magazine, issued quarterly, with 24 or 28 pages, is in Norwegian and thus we do not distribute it to the rest of the Retina community elsewhere in the world. Our members receive it either by email, in print, CD or Braille. The emphasis is on research news, presentation of our conferences and meetings, technical aids and the rights of the visually impaired. We have recently added a book review like yours. Now we get some added input from you for our future editorial discussions.
Thanks a lot and very best wishes for your continued fine work.
The Norwegian RP Association Ole Christian Lagesen Deputy President
Dear Editor, In November of 2006 I had surgery for medullary thyroid cancer. Prior to this surgery I researched every article I could lay my hands on re the disease, its symptoms and the treatment.
During my reading I discovered that it is possible to have some ‘eye episodes’ with this form of cancer. I also discovered that it is possible to have this disease for a number of years before doctors realise it may be thyroid cancer. In my case I had three episodes of central serous chorioretinopathy, the first ten years before the cancer was diagnosed. My ophthalmologist thinks that the two conditions may be linked.
Steroids are a trigger for episodes of central serous. I developed eczema as a result of my immune system crashing prior to the cancer diagnosis, and I had to negotiate for an alternative, Elidel, which cured the eczema, but which costs $40-$50 per 15g tube.
I believe this non-steroidal cream should be subsidised; for those with central serous eye conditions who may experience a downturn in vision as a result of their use, people who cannot tolerate steroids, children, and those who experience an allergic reaction to steroid creams. Terri Greenhalch
4. >From the President’s Desk As we reflect back on an outstanding summer here in New Zealand I look forward to flying north to the 15th Retina International Congress in Helsinki, Finland. This is not for the 21 hours per day of sunlight but the bright future for the treatment of retinal disorders. Having scanned abstracts of presentations, it’s clear the world’s leading minds in ophthalmology and vision science will be speaking with a degree of pride as they report on progress toward treating retinal disorders at this conference. At each conference I am intrigued and enthused at news of treatment initiatives reaching the human clinical trial stage and in 2008 this will be the case with respect to AMD antioxidants, gene replacement therapy in Lebers Congenital Amaurosis, Neuroprotection in RP, and of course retinal prostheses. At this year’s conference there is the opportunity to ‘ask the ophthalmologist’ so if you have a question you would like me to put to one of the world’s leading authorities in the clinical management of retinal disorders please feel free to contact me before Friday the 20th June.
As many of you will be aware access to new anti-VEGF agents for the treatment of wet macular degeneration has alerted Retina NZ to issues surrounding public and health insurer funding of ophthalmological treatments. I am keen to hear your views on this topic as we move into an era when more effective but expensive treatments gain approval for general clinical usage. As a patient group what message should we be communicating to whom? While I am personally inclined to fully support submissions to Pharmac from pharmaceutical manufacturers for partial and full subsidy of courses of treatment, I encourage your feedback and guidance as we sail into uncharted waters in this regard.
What emerged from Retina NZ’s planning meeting in Auckland recently is the realisation that a number of important services we could provide to our members underscores a need to have greater financial resources and appropriately motivated people. If you have an interest in shaping a quality website asset, delivering vital information and advice to newly diagnosed patients, or turn your skills to treatment access projects then we want you to join our friendly committed team. Why not call me and discuss what you like about Retina NZ and how you might like to have some fun in achieving our shared objectives.
Best Regards, Fraser Alexander President Retina New Zealand Inc
5. Retina International Retina International, formerly known as the International Retinitis Pigmentosa Association is a voluntary charitable umbrella association comprised of 33 national societies each of which is made up of people with Retinitis Pigmentosa, Usher Syndrome, Macular Degeneration and other allied retinal dystrophies, and their family and friends.
Its main objective is to promote the search for a treatment for retinal dystrophies. In undertaking this Retina International keeps in touch with international scientific developments and fosters cooperation and coordination amongst scientists with a view to expediting the development of treatments for RP, Usher Syndrome, MD, and other retinal dystrophies.
Public awareness, and the provision of information through the maintenance of a high degree of international contact, plus the exchange of literature and other useful material is paramount. Retina International also promotes the establishment of new societies in countries where they have not previously existed. In encouraging cooperation among member societies, Retina International also represents the member societies collectively to supranational organisations.
Countries which belong to Retina International include New Zealand, Australia, Brazil, Canada, Finland, France, Germany Greece, Hong Kong, Norway and Pakistan. The 33 member societies are supplemented by observer members, candidate members, and associate groups. Other groups interested in the work of Retina International from a variety of countries also support the vision of this organisation.
A Management Committee is charged with the day to day running of Retina International. The members of this committee are elected from among delegates to the General Assembly. The function of this committee is to promote the formation of a society of people with retinal dystrophies in countries where none exists. They also represent member societies collectively to supra national bodies, such as the European Union and the AMD Alliance. Together with the President the Management Committee work on the policy and issues determined by the General Assembly. There are nine members of this committee, one of them being our Retina NZ President, Fraser Alexander.
Christina Fasser of Switzerland is the President of Retina International. She has been a leading voice for 15 years on the need to focus attention on scientific research to find a cure for retinal blindness. Christina was diagnosed with RP when she was 13, but it did not really affect her thinking until she had to choose a profession. Through determination she has been successful in her career and has risen to a highly respected position in the retinal research community. While Christina misses the expressions on people’s faces and the ability to read print she comments that new technology has opened up possibilities to independently access information.
As President of Retina International Christina works with the Management Committee to facilitate communication between members, researchers, industry and government. She represents members at meetings worldwide.
This information was downloaded from their website www.retina-international .org
6. Snippet If you have Macular Degeneration, Stargardts Disease or a vision impairment affecting your central vision a new online support group is available. The primary objectives of the group are to provide online support, a meeting place, to discuss family and social issues and your eye condition. The group creates opportunities to form new friendships and social contacts. The moderators of this group were specially appointed and have vision impairments themselves. To subscribe to the group check out www.blindsocial.com or send an empty message to firstname.lastname@example.org
7. Research Identification of Deficient Receptor That Causes Dry Form of AMD Offers New Hope For Treatment of Vision Loss Scientists have won a major battle in the fight against age-related macular degeneration, or AMD. An international team, led by researchers at Sainte-Justine Hospital and the Universite de Montreal has identified the deficient receptor that causes the dry form of AMD.
The researchers discovered that a deficiency of the CD36 receptor prevents the evacuation of oxidised lipids in the eye. Those oxidised lipids in turn accumulate and attack the layers beneath and over the retina-thereby causing vision loss.
“Our discovery has important implications for the development of new therapies” explains lead researcher, Dr Sylvian Chemtob, who co-authored the paper with Universite de Montreal collaborator Dr Huy Ong, a professor at the faculty of Pharmacy, as well as Florian Sennlaub of the Institut National de la Sante et de la Recherche Medicale (INSERM) in France.
Chemtob used mice and rat models to pinpoint the scavenger receptor responsible for retinal degeneration typical of dry AMD. “We found that a deficiency in CD36 receptors leads to significant and progressive age-related macular degeneration” he said. “CD36 deficiency leads to central vision loss-a key feature of dry AMD”.
“This discovery brings us one step closer to treating dry AMD which could significantly improve the quality of life of seniors who are most affected by this eye disease”. Having developed the molecules that activate the CD 36 receptor researchers are working on the validation of the efficacy of these molecules as potential therapeutic agents for dry AMD treatment and hope to have achieved this by 2015.
AMD Doubles Heart Attack and Stroke Risk In a report published in the British Journal of Ophthalmology it was found that people who have AMD have twice the risk of dying from a heart attack or stroke according to Australian researchers. Dr Paul Mitchell from the Centre for Vision Research in the Department of Ophthalmology at the University of Sydney said they found a positive long-term link between AMD and subsequent cardiovascular and stroke mortality in a population of older Australians. Mitchell said that ophthalmologists and general practitioners should be aware of this potential link and need to consider appropriate management of traditional vascular risk factors such as smoking, blood pressure, and blood lipids in their patients with AMD. In the study 3654 people over the age of 49 were examined, five years later 2335 people were re-examined, and after 10 years 1952 people were again examined. The researchers found that for people under 75 when the study began early AMD was linked with a doubling of their risk of dying from heart attack or stroke over the next 10 years. For those with late-stage AMD at the start of the study, their risk of dying from a heart attack was increased fivefold, and their risk of stroke increased 10 times. Mitchell’s team found that late stage AMD may be associated with increased vascular risks, though noted it could in part reflect the shared risk of factors such as smoking.
AMD and atherosclerotic vascular share common risk factors that include hypertension, hyperlipidemia and smoking said Dr G. Fonarow, Professor of Cardiology at the University of California. In addition, systemic inflammation may increase the risk of AMD and atherosclerosis. Patients and physicians should recognise that patients diagnosed with AMD are more likely to have underlying cardiovascular disease and subsequent events and take appropriate steps to lower that risk through lifestyle changes and cardiovascular protective therapies Fonarow advised.
In another report in the same issue of the journal British researchers concluded that genes that control the production of chemicals involved in inflammation may play a significant role in AMD. One gene variation associated with the gene that produces an inflammatory chemical called interleukin 8 was significantly more common among people with AMD the researchers found. This gene variant has been linked previously with inflammatory diseases and cancer, and if these findings are replicated the researchers think it could lead to genetic screening for AMD and possibly the development of medications to treat the disease.
Oxidative Damage-Induced Inflammation Initiates Age-Related Macular Degeneration Oxidative damage and inflammation are postulated to be involved in age related macular degeneration. However the molecular signals linking this are unknown. Recent research has described AMD like lesions in mice after immunization with mouse serum albumin adducted with carboxyethylpyrrole, a unique oxidation fragment of docosahexaenoic acid that had previously been found in proteins in drusen from AMD donor eye tissues and in plasma samples from individuals with AMD. Immunised mice develop antibodies to this hapten, fix complement component-3 in Brusch’s membrane, accumulate drusen below the retinal pigment epithelium, during ageing, and develop lesions in the retinal pigment epithelium mimicking geographic atrophy. This is the blinding end-age condition characteristic of the dry form of AMD. The researchers hypothesized that these mice are sensitized to the generation of carnoxyethylpyrrole adducts in the outer retina where docosahexaenoic acid is abundant and conditions for oxidative damage are permissive. This new model provides a platform for dissecting the molecular pathology of oxidative damage in the outer retina and the immune response contributing to AMD. Downloaded from Nature Medicine Vol 14 No2 February 2008.
8. Retina NZ Annual General Meeting Our Annual General Meeting is to be held in Hamilton on Saturday the 27th of September. You will receive a notice and a proxy voting form in September. At this meeting we will be ratifying our new constitution.
Speakers for the meeting have yet to be confirmed, but Fraser and Susan will be reporting back from the Retina International Conference.
There has been some interest in travelling as a group by bus from Auckland to attend the AGM. If you are interested could you please contact Camille Guy on 093787553 regarding this.
If anyone from further afield will be attending and requires accommodation could you please contact Susan Mellsopp on 078533612 as soon as possible. Limited accommodation at $40 per person per night is available.
9. Ask the Ophthalmologist The opportunity is available to ask questions of leading ophthalmologists speaking at the Retina International Conference in Finland. If you have a question you would like to put to these specialists please forward them to Fraser Alexander on 096388091. Replies to your questions will be forwarded to you following Fraser’s return from the conference.
Quote: You are never given a wish without being given the power to make it come true-you may have to work for it however.
Change comes from within 10. Janet Palmer Janet Palmer is a name well known to many of the members of Retina New Zealand. She has been the National Secretary for almost 10 years and in this time has seen many changes. Janet has resigned as secretary but will remain a member of Retina NZ.
Over the years Janet has been ably assisted by her husband Keith who has provided support for her and also has assisted with practical support at meetings and with the membership role in general.
Janet enjoys music and is a member of a choir. Janet and Keith have a son Chris, a daughter Vanessa, and one granddaughter.
On the 8th of March a large group of local members (including three former Wellington Chairperson’s) attended a luncheon to farewell Janet at a café in Island Bay. Janet, Keith, and their daughter Vanessa were welcomed by Elizabeth East and presented with a gift to thank her for all the work she has done for Retina NZ.
The executive and membership would like to wish Janet all the best for the future.
By Sue Emirali
11. Snippet Lucentis Trials Final one-year results from the SAILOR clinical trial show that Lucentis was not associated with a higher rate of stroke. Concerns had been raised last year during a previous trial that those being injected with Lucentis had a 4 times higher risk of stroke if having the 0.5mg dose. Patients with a stroke history were at a higher risk if taking Lucentis. The Phase 111B SAILOR study compared the safety of 0.3 and 0.5 injections. Efficacy data showed that treatment on an as needed basis may be less effective than monthly dosing. Ophthalmology-2007
12. Coping Retina NZ Telephone Based Peer Support Service This confidential service is available to anyone experiencing sight loss issues, no matter how minor. The 0800 233 833 number is free to the person making the call. The majority of calls are answered directly but an answer-phone may pick up your call if the person on duty is away for a short period of time. We endeavour to reply to peer support calls as quickly as possible, within 48 hours of receiving a message being the maximum time. If you leave a message on the peer support 0800 number could you please leave an area code with your phone number.
Retina NZ has a trained peer support team based throughout New Zealand who have a range of different eye conditions and a knowledge of local support networks. Following your initial contact with the peer support phone line you can be matched with a peer supporter with a similar eye condition to yours who will provide a listening ear and an experienced understanding of your needs. Peer supporters are also available for people who are newly diagnosed, and their family and friends. The peer support team are also able to provide information on a range of topics such as benefit entitlements, low vision clinics, technology and tips for coping.
Newly diagnosed callers often comment that they would like to meet others with a similar condition in their area. To meet this need the Kapiti VIPs were established approximately 5 years ago. This group now has over 30 members, the majority having some form of macular degeneration. If you live in the Kapiti area and would like to join this group please contact Heather Tofts on 04 298 7034. Later this year we are hoping to set up more support groups. Coordinators are needed to ensure this happens. If you would like to help set up a group please contact Elizabeth East on 04 299 1801 to register your interest.
Up the Garden Path By Logan McMullen Since losing my sight nearly a decade ago one of the biggest barriers I have encountered in respect to my personal orientation and navigation is the lack of maps that are accessible to me. The frustration associated with this barrier was brought to the fore a little over twelve months ago when I relocated to Christchurch and needed to be able to quickly and efficiently navigate unfamiliar city blocks and bus routes.
A system which is commonly used by sighted people for both personal and vehicle navigation is GPS or the Global Positioning System. This is a system based on satellites that allows a user with a receiver to determine their location on the earth’s surface. Thanks to various software packages blind and visually impaired people can now use this global system to improve their own navigation.
Loadstone, one of these packages, is free software designed to be used on some mobile phones in conjunction with an external GPS receiver and allows the blind and visually impaired to navigate areas using points of reference they, or others, have created. In order to use Loadstone a person will need a mobile phone with access software and a GPS receiver, but this isn’t as daunting as it sounds.
The cell phones and access software can be purchased either new from the Royal New Zealand Foundation of the Blind or second hand from a number of sources. GPS receivers can be purchased from a number of retailers for, in some cases, as little as $80. Additionally, there is no need to have the phone connected to a mobile phone network if the person does not wish to use it for calls.
Once you have got all the equipment you need and have set the software up, you can start to mark points-like your local dairy or bus stop, and use these for reference at a later date. In addition to creating your own points, the Loadstone website has a database of points which other users have created and uploaded to the internet, and soon a product called Hiker will be available which will allow people to purchase entire maps for every town and city in New Zealand. Loadstone, and products like Hiker, provide blind and visually impaired people with the ability to navigate in a similar style to that of a sighted person using a paper map-increasing personal independence and safety.
I am currently using a trial version of the Hiker information in conjunction with Loadstone and it provides me with the name of every intersection in Christchurch allowing me to plan, and map routes to destinations in addition to being able to know exactly where I am while in a personal car or taxi. Another benefit of this type of personal location system is that, in using this phone based software, I am able to find out where the next bus stop is in addition to which bus will next pass the stop, and the time it is due.
An example of how I personally use the Hiker information and Loadstone: I live on the Northwestern edge of Christchurch City, about 7 km from the Foundation Offices where I work. When I was aware of the names of the main roads leading me to the office I found the destination street I needed (Bristol St) and worked backwards marking the intersections where I intended to turn when walking to the Foundation then I saved these points in Loadstone. Once I had this route, it was a simple task to set Loadstone to refer only to those points and I began my walk with Loadstone telling me that I was 150 metres from each intersection that I had marked….if I was unsure (or had forgotten) which way I needed to turn I simply stopped at the intersection and using the navigation key of the phone searched for my next marked point and headed off again.
This software and the GPS system is by no means a replacement for good orientation and mobility skills, but it provides an additional aid when getting about in both familiar and unfamiliar areas.
For further information about Loadstone visit www.loadstone-gps.com
Adding Contrast to the Edges of Steps Steps frequently pose a hazard to people with vision impairment because they can blend in to each other and have the potential to cause falls. Placing contrasting edges on steps is an effective way of highlighting each step and improving their safety.
When selecting a contrasting colour it is important to consider the overall colour of the steps. If the steps are a dark shade, the contrasting edges should be a light shade such as white or yellow. If the steps are a light shade, the contrasting edges should be a dark shade such as black. When in doubt (which is often the case with multi-coloured or patterned surfaces and concrete) ‘safety yellow’ is considered to be the colour that offers the most contrast against the most number of backgrounds (except of course yellow).
The contrast should be applied to the entire width of the step. There are a variety of methods for adding contrast to the edge of steps, paint, applying slip-resistant adhesive treads, applying stair nosings.
Painting the step edges is the most versatile method because it allows a wider choice of colours, and enables the strips to run the entire width of the step. Paint can be applied to most surfaces other than carpet. A primer may need to be applied to some surfaces before painting, check with your local paint supplier.
The paint you use should be slip resistant, also called paving paint, otherwise you can add sand to the paint to achieve a level of grip and slip resistance. Acrylic paint is recommended for quick drying.
To apply paint to the edges of steps: 1. Use masking tape to form a straight line 75mm back from the front edge of the tread. 2. Use masking tape to form a straight line 50mm down from the top edge of the riser. 3. Paint between the masking tape strips with contrasting paint.
Self adhesive strips that can be applied to the edges of steps are available in hardware stores, in a variety of widths and depths. Although easy to apply the disadvantage of this type of contrasting step edge is that you are usually restricted to the pre-cut size of the strips and they can only be applied to flat and smooth surfaces such as tiles, vinyl or wooden flooring. These strips are water resistant, not water proof, but can withstand regular washing. They do require more frequent replacing than other methods.
Stair nosings are the metal edgings you can have installed onto the step edges of any surface including carpet. They are aluminum caps with a PVC insert for grip and safety. They are slip-resistant and effective in highlighting the edges of steps. Various colours are available to contrast with the existing surface, for example brass or chrome finish. These stair nosings are slightly raised from the step/floor surface and may pose a trip hazard for some older people especially when installed on smooth and flat surfaces. They work best on carpeted stairs.
Information downloaded from the Vision Australia website www.visionaustralia.org.au
Please note that in a previous edition of the newsletter the availability in New Zealand of Eco-Glo strips that glow in the dark were discussed in depth (www.ecoglow.com), along with attaching strips of Velcro to the edges of steps as a safety measure.
MS Word Plug-In A new plug in being developed by Microsoft would allow users to save documents such as talking books, magazines and newspapers in a digital audio format called Daisy. This software should be available free from early 2008. Once the Word document is saved is can be played on a PC using a Daisy software player which can be purchased from Vision Australia for about $60, or the Daisy physical players. The plug-in is compatible with Word XP, 2003 and 2007. It can also be downloaded from Microsoft, Daisy and SourceForge’s websites. It is hoped Adobe will follow Microsoft’s lead so PDF documents can be saved in a Daisy format, something Adobe Pacific is working on.
13. Auckland Branch Meeting The Auckland Branch held a meeting on Sunday the 14th of April which was attended by approximately 40 people including the National Executive who were in Auckland for a planning meeting. Two very interesting speakers provoked much thought and many questions from the floor.
Dr Philip Polkinghorne Dr Polkinghorne began with a description of the anatomy of the retina which he followed with an overview of retinal detachment and AMD. He noted that the biochemical and enzymatic approach to treating retinal conditions was now the most popular and would be readily available before gene therapies.
He discussed the development of retinal imaging technology, in particular optical coherence tomography (OCT) scanning and its role in diagnosing retinal damage. In discussing retinal detachment surgery, he stated that the greater the degree of myopia and macula detachment the less satisfactory would be the surgical outcome. Some retinas do recover or repair themselves within a year of surgery.
Apoptosis or cell death in the retina can occur for a variety of reasons. One third of New Zealanders over 80 have age-related MD, with some experiencing geographic atrophy. While to date Ocuvite has been used to slow the progression of ARMD, a new drug is now being trialed to treat this condition.
Michael Lloyd Michael, an adaptive technology trainer with the RNZFB, spoke on the role of technology in the lives of vision impaired people. He described basic technology such as talking watches and clocks, then moving through to mobile phones with talking software. These allow texting, keeping contact lists, storing calendars and notes. They offer security and safety and allow for connection with social groups.
Computers offer independent information gathering and communication. Scanning software means users can scan mail and other personal documents. Magnification software is readily available, ranging from expensive programmes to free or relatively inexpensive software which can be downloaded over the internet. Screen readers such as Jaws can be purchased, but there are a range of free programmes such as Thunder and System Access, and the MS operating system has a magnification tool as well as a basic narrator available.
Quote: It is our choices that show what we truly are, far more than our abilities-J. K. Rowling
14. Notices Newlands Support Group Gael Hambrook organized the initial meeting at the Newlands Community House on the 25th of February. 9 people attended, 3 of whom were sighted volunteers or drivers.
Sue Emirali and Elizabeth East attended on behalf of the Retina NZ executive. Gael welcomed everyone and asked each person to introduce themselves. Elizabeth gave a brief overview of the history of Retina NZ. She also spoke on the importance of lighting and contrast for people with low vision. Elizabeth also showed a number of items she had found useful in the kitchen, tactile ways of identifying medications, and a useful magnifier for reading the telephone directory. Sue Emirali spoke briefly about a lamp with a magnifier that she had recently purchased. The meeting concluded with afternoon tea.
It was agreed to hold another meeting on Monday the 12th of May at 2pm at the Newlands Community House. If you would like to come to this meeting please phone Gael Hambrook on 04 970 3575.
Newsletter on Tape If you receive this newsletter on tape it is yours to own. You do not have to return it to either Retina NZ or the RNZFB. You are welcome to do as you wish with the tape; pass it on to friends, keep it, or dispose of it. Please do not post it back to us!
Email Addresses If you have an email address, even though you may receive your newsletter in another format, could you please forward this to either the membership officer or the newsletter editor please. This will enable us to distribute other information to in a timely manner.
When forwarding your email address please ensure you put your name and mailing address in the body of the email so we know who you are.
Constitution A draft copy of the new Retina NZ constitution is available for feedback. If you would like a copy to read and comment on please contact Kiran Valabh on 093606922 and a copy can be forwarded to you in the format of your choice.
The Good Look Book Have you thought of purchasing this for your family or friends? Eight members of Retina NZ tell their stories, one of which has been chosen for publication in an Canadian book of vision loss stories. The Good Look Book costs just $10 plus p&p and is also available on tape or CD. It can be purchased from the membership officer on 04 299 1801 or PO Box 2232 Raumati Beach 5255.
15. Book Review Long Cloud Ride: A Cycling Adventure Across New Zealand by Josie Dew; Sphere, 2007. TB 7836
After two months on board a Russian container ship sailing 15,000 miles across the world, Josie finally arrives in New Zealand with her bike. She spent Christmas in Auckland and then over the next nine months she cycled 10,000 kilometers through the North and South Islands. She experienced the wettest, windiest and stormiest summer on record, was spat at, shouted at, honked at, and both run off and blown off the road. She was stranded in Masterton during the storms which flooded the Manawatu, her stories of this time are both funny and sad, a view of the floods not heard before. The mentality of New Zealand drivers and their appalling risk taking and diabolical driving comes in for some particular scathing criticism. Josie got soaked, sunburnt, hailed and snowed on, starved and over fed, and under charged and over charged.
She describes the wildlife, possums (dead from what she calls Dunlop disease), the call of the morepork, fantails who took it upon themselves to follow her, harrier hawks that dive bombed her, and roads blocked by flocks of sheep and herds of cows. She was unimpressed by much of the Bay of Plenty, particularly Tauranga, and found many of our towns to be plain and uninspiring.
Josie Dew has received some criticism from New Zealanders for her observant and witty descriptions of New Zealand life. Her sometime quirky observations and dislike of several places has not been well accepted by reviewers who have commented that her wit appears to come across as ridicule of the New Zealand way of life.
Josie has written several other books relating her cycle tours to interesting and far flung parts of the world. The Wind in My Wheels relates her tales of cycling through Europe, Iceland and India, while The Sun in My Eyes offers a very different outlook on Japan. Each of her 7 books is written in the same witty, critical and amusing style.
This is one of those talking books that have been great to listen to when I could not sleep, and I hope the library will purchase the full set of her books. Most libraries stock the majority of the print versions.
Mission Statement To promote public awareness of retinal degenerative disorders; To provide information and support; and to foster research leading to treatment and an eventual cure
Editor Susan Mellsopp 108B Comries Rd Hamilton Phone: 07 8533 612 Email: email@example.com
Peer Support Coordinator Membership Officer Elizabeth East Email: firstname.lastname@example.org PO Box 2232, Raumati Beach 5255 Telephone 04 299 1801
Please note: The Deadline for articles for the winter issue is July 13th
To order: EMAIL COPIES: contact the editor if you would like your newsletter emailed to you TAPE COPIES: contact the editor if you require your newsletter on cassette tape and advise if you also require a print copy
If you wish to contact Retina NZ please use the above contact details or ring us on 0800 233 833 or email at: email@example.com
List of Publications “A Family Affair”-A New Zealand Guide to Inherited Retinal Degenerations. Re-published in September 2000, 32 pages. Age-Related Macular Degeneration: What You Should Know-RNZFB Members will receive the relevant booklet when joining Retina NZ. Extra copies of “A Family Affair” can be ordered at $5 each from the Newsletter Editor Free Brochures Coping with some sight loss or a degenerative retinal condition Supporting people with retinal degenerative disorders Detached Retina-a matter of urgency Take the Amsler Test-a self testing card for early detection of macular degeneration
Members can obtain these brochures free from the Membership Officer and requesting the ones you require. A charge of $5 is made to non-members to cover printing and postage.
Retina New Zealand Inc is grateful to the Royal New Zealand Foundation of the Blind for funding the printing of this newsletter
DO YOU NEED HELP OR ADVICE The Retina NZ Peer Support programme is a free and confidential service operating nationwide. To make contact with one of Retina NZ’s peer supporters telephone 0800 233 833. All calls are treated in strictest confidence.
Ring any of the following free-phone numbers if you want to speak to a geneticist or genetic counsellor about your own diagnosis or RP, macular degeneration or other retinal degenerative disorders.