Retina NewZNovember 2016 No.571The Newsletter of Retina New Zealand Inc.PO Box 2232, Raumati Beach, Paraparaumu 5255Phone 0800 569849

In This Issue

Cover Story: Low Vision Workshop a big success! 1From The [Acting] Editor 2From the President … 2Low Vision, Blindness and Our Bodies 3Youth meet: Food, Coffee & Good Chat! 5World Sight Day: Dunedin Celebrates 5Nutrition for the Retina – By Emma Sandford 6Pedestrian safety: why we need an inquiry 7Research Project: Lighting & Low Vision 8Phase 2 study – Can you help? 9Retina Research Update 10Tech Update: The best of 2016 – by Matt Rudland 10Kapiti Vision Impaired Persons Group [VIP’s] 12Tauranga Group 12Support Groups 12Easy Recipe 13Notices 13

Cover Story: Low Vision Workshop a big success!In recent years, our Management Committee have tried to make our AGM weekends more eventful and “outcomes driven”. Last year we had a peer support training day on the Friday, so this year we held a Low Vision Workshop, facilitated by our AGM guest speakers – Vildana Praljak and Dieu Nguyen.Attendees included Optometrists, community-based Occupational Therapists, Orientation & Mobility and Assistive Daily Living Instructors, from across Auckland, Whitianga, Thames, Hamilton, Dunedin, as well as some of our committee members as a patient cohort.It was great to share information, resource networks and perspectives with each other. It highlighted the role of Retina NZ as an enabler, giving Low Vision service providers a forum to share their ideas and perspectives to ensure the best possible outcome for people with Low Vision, through a referral network of information and service providers.

From The [Acting] EditorWell unless you’re using a screen reader or listening to the Audio CD, you will probably have noticed the newsletter’s had a makeover. As you might recall our Newsletter Editor resigned from the role in August, so while we’re “between Editors” it seemed the perfect opportunity to review and refresh the newsletter, so the next Editor has a new template design and clearly-defined production process.So putting my Treasurer’s hat on for a minute, with a bit of clever “bean-counting”, we’ve managed to get a few pages of colour and better quality paper for the same money we were spending previously. My next “bean-counting” trick is to add an extra 4 [or even 8] pages without costing us more money. Its clear to me that there’s loads of important stories to cover and because we publish in Large Print there’s about half the word-count of a typical A4 page. I feel we need to add some additional pages so we can cover all the important issues.One exciting new addition [for me anyway!] is the increased Accessibility achieved by adding the EPUB format to our email options and by ensuring the PDF format is fully accessible. EPUB’s can be read on your phone or iPad/tablet or computer using iBooks or ePub-reader. The big advantage of ePub is the ability to change the text size, font and background while still retaining the sense of reading a printed copy. Having an Accessible PDF is really important because it contains all the visual treats for sighted readers and full description for Low Vision or Blind readers, which means the Newsletter becomes more than just a good read, it becomes a tool that promotes inclusivity for those of us with Low Vision or Blindness, by allowing us to share and discuss stories with friends & family.FEEDBACK – Tell us what you like [or dislike] – its okay… brutal honesty is accepted and constructive criticism is welcomed! If you want more of what you like to read about, let us know what you like. We’d love to hear from you by email: editor@retina.org.nz Happy Reading! Cheers – Mike Smith

Job VacancyWe’re calling for “Expressions of Interest” for the Newsletter Editor’s role. One aspect of the role is sourcing/writing/editing stories, the other aspect is publishing the newsletter in its various formats. If you excel in one aspect or the other [or both] we’d like to hear from you, including your skill-set and which aspect[s] of the role interest you. We’re a charity so the remuneration is modest. If you have a passion for the role and not simply “in it for the money” then please email Sue Emirali: president@retina.org.nz

From the President …It seems incredible to be wishing you all a Merry Christmas as 2016 draws to a close in what feels to me like March! We hear from a lot of our members that the holiday season can be a lonely time as regular activities close down and friends & family are not always around.It can also be harder for many of you to see in bright sunlight and having the right sunglasses for your eye condition is key to enjoying the outdoors. It is also worth considering a sun hat with a peak to reduce the amount of direct light on your eyes.

Over the past year Retina New Zealand has been involved in various initiatives to promote the awareness of low vision issues. We have participated in the Ministry of Health Low Vision Strategy Review, put in a submission on the Marrakesh Treaty and participated in various other central and local government disability forums. One of the reasons we do this is to highlight that there are a lot of people in the community with low vision and that with the right infrastructure they can remain part of society. An example of this is highlighting the benefits of removing steps from public areas and working towards making all public spaces accessible for all.We are fortunate to be living in a time where technology is aiding our independence. You can now purchase talking scales, clocks, watches, phones, computers and virtually any item you require. Many of you are already downloading talking books to a tablet and using your cell phones to tell you where you are if you get lost. For most of us, the hardest part is learning how to use all of this equipment and getting enough practice to feel competent. You may have a SeniorNet group in your area or they may be able to advise where you can get help. I am happy to let you all know we have a vibrant Youth section within Retina, run by Zane Bartlett and Harriet Kay. They are connecting with young people and arranging to meet with them in various areas to enjoy each other’s company and share experiences.I would like to thank the Executive Committee and all of our other volunteers for their continued work to increase awareness around low vision issues and provide peer support for our members and the public. Please remember you can contact any of us, any time on 0800 569 849.I would also like to thank you all for your continued support by choosing to be a member of Retina NZ. There is still a lot more work to be done on this journey of awareness of low vision issues in New Zealand and with the support and feedback from the membership our work is made easier.Merry Christmas!Sue Emirali President – Retina NZpresident@retina.org.nz

Low Vision, Blindness and Our BodiesThe journey that led Vildana Praljak and Dieu Nguyen, pioneers in low vision and blindness services in Australia to visit New Zealand.Neck tension, headaches, back pain, muscle cramping, visual fatigue, tripping, falling, loss of balance, do these symptoms sound familiar? These issues are often experienced by people with vision loss, but rarely associated with the loss of sight.Vision loss has a significant impact on the human body. In this article we’d like to share some of the learnings that have come from our personal and professional experiences through working with patients over the past nine years. Vildana's Story:When I was diagnosed with cone-rod dystrophy which resulted in low vision, I thought the biggest problem was not being able to see to get around, recognise faces, experience colours and details of objects. I quickly realised it also meant night blindness. What I didn’t expect was to feel constantly fatigued; some nights I wasn’t sure whether I had passed out in bed or fallen asleep. My posture, balance and co-ordination was deteriorating along with my eye sight. I had an increase in headaches, in addition to neck pain, muscle cramping and developed a curve in my spine with poor posture. I hadn’t realised that the way I walked had changed, twisting my body to lead with my left side because I could see better with my left eye. I carried a lot

of tension in my body, which in turn affected my mental health. It took me a long time to realise that all of these symptoms related to my vision loss. Living with low vision is like living between two worlds; the world of light where I can see enough to get by, and the world of dark, where I rely on all other senses and my intuition. Everyday, I need to negotiate between these worlds.  Dieu’s clinical experiences: As an occupational therapist specialising in the field of blindness and low vision for the past 9 years, I have developed a strong under-standing and appreciation for the need to directly address the impacts of low vision on the human body. My work has since involved providing practical strategies and information for people to better understand and deal with the secondary symptoms related to vision loss. A few years ago, I met a patient whose personal perspective would come to redefine my understanding of vision loss and our bodies.‘Lisa’, aged 23 at the time, wished to become independent in cooking. Lisa was blind from birth. During our sessions, Lisa explained she had a history of anorexia and bulimia and had been hospitalised a number of occasions due to an eating disorder. I was perplexed. In that moment, I realised I had only understood body image for persons with low vision and blindness in a limited way. Part of my role includes finding strategies for identifying clothing, make-up application, personal grooming and maintaining one’s health & wellbeing through food and exercise. But my thinking had not considered the gamut of this topic in a holistic way, coming from a focus on the impact of vision loss on our bodies. Over the the next 2 years, conversations with my colleague Vildana who has low vision deepened my practice and led us to developing workshops that focus specifically on the impact of low vision and blindness on the body and our personal identities.  Strength, Balance and Positive Thinking: Workshops on Body Movement and Self Expression for Persons with Vision Loss. This a 2 day workshop that has been developed to explore and reduce the impact of low vision and blindness on the human body.  We work in small groups and provide one-on-one advice for patients to understand the effects on the body including:Increased tension in the muscles; Headaches and migraines;Reduced balance and postural issues;Changes in the positioning of our feet, hips and shoulders; The impact of these symptoms on mental health.Patients who have attended the work- shops reported a better understand-ing of the impact of vision loss on their physical bodies and have also expressed a reduction in visual fatigue by applying some of the strategies gained. In August 2016 we were privileged with an invitation by Retina New Zealand to share our learnings with service providers from across the country. It was a unique opportunity that saw Retina NZ, the Blind Foundation and other health professionals come together to innovate services for persons with low vision. There was a general consensus that improved low vision services could result in greater levels of independence, employment and social inclusion for these patients. Low vision aids to improve lighting, contrast and magnification, orientation and mobility services, daily living skills training and employment services were highlight-ed as essential. Furthermore, it was acknowledged that a streamlined approach engaging governments, health organisations and service providers in the sector would facilitate better outcomes for the blindness and low vision community.  We were honoured to speak at Retina NZ’s 2016 AGM in Hamilton on the last day of our visit. We presented the topic: “The impacts of vision loss on our bodies”, which was well

received among the members present. The concerns identified were the same as those expressed by patients of our services in Australia, suggesting a need for programs like strength, balance and positive thinking. We hope our visit was the start of an ongoing conversation between health and disability providers and look forward to be a part of this dialogue.  We would like to thank the Executive Committee of Retina New Zealand for creating the platform that enabled these conversations to be possible. 

Youth meet: Food, Coffee & Good Chat!On August the 27th,  Retina NZ held its Annual General Meeting which Zane and I attended and supported, as we’re both now part of the Executive Committee.A small group of young vision impaired people attended, which we were thrilled with. Zane and I are so often talking for, and advocating on behalf of our Retina Youth, so it was nice to put some names to faces, or in some cases voices to names!We enjoyed a large and tasty lunch with the rest of the Members, who were naturally a fair bit older than us, but they were engaging and interested to know what it's like to be vision impaired now with so many advances in technology.We then headed off to do our own thing at a local cafe.  We very happily had a tag-along, who was Benji Wright, a young doctor who received a Retina NZ scholarship last year. It was really interesting to talk with someone who was both a peer and a medical professional. We were able to have a meaningful conversation on what it's like to live with this disability, the differences in our eye conditions, and how we have been treated by medical professionals in the past.Unfortunately, it has mostly been quite negative, as many professionals have seen just the condition and not the person and how it will affect them for the rest of their life.Benji is only one person and we acknowledged he can only do so much, but the fact that he so desperately wants to get it right, gives us all a lot of hope for the future, and that our opinions and feelings do matter!We’ll be in Napier on Saturday 12th November, and our next meet-up will probably be in Palmerston North in March 2017. We’d love to meet up with youths, so stay in touch and we’ll catch up when we can! Text me on 021 0223 1989 or follow us on Facebook – Harriet Kay.[retina youth Ad] Retina Youth a Place for Us – check us out on the world wide web www.retinayouth.org.nz

World Sight Day: Dunedin CelebratesOn Thursday 13 October, VICTA (Visual Impairment Charitable Trust Aotearoa) and friends celebrated World Sight Day in Dunedin with a series of fun and informative events on the linked themes of low vision awareness, pedestrian safety and public transport promotion. The festivities began with members of the North East Valley Community Choir singing favourite bus songs from childhood on buses travelling through central Dunedin.  At lunchtime in the lower Octagon, contestants in the Otago Daily Times Low Vision Team Challenge donned frosted goggles to tackle a mobility scooter obstacle course, complete with speed bumps, stop/go signs, flashing lights and road cones, and then moved on to the everyday challenges prepared by Occupational Therapy students, where contestants learnt

all about the frustrations of reading, mixing drinks and playing ball games with impaired vision. The Octagon festivities also featured: the dance group Ageing Gracefully performing with VICTA’s high visibility walking sticks [VIZstiks] to the Louis Armstrong number “My Walking Stick”;  Age Concern’s Steady as You Go and Tai Chi groups demonstrating their strength and balance skills; the North East Valley Community Choir singing; Driving Miss Daisy and GoBus drivers displaying their vehicles and chatting to passersby; staff from the Otago Regional Council answering question about bus timetables and routes; passersby donning frosted goggles and trying low vision activities in a non-competitive section of the Octagon; and Countdown staff inviting contributions to VICTA and collecting signatures on VICTA’s petition for an inquiry into pedestrian safety. Later in the Dunedin City Library audiences enjoyed thought-provoking talks from traffic engineer Bridget Burdett [“Measuring Accessible Journeys”] and the Dog & Lemon Guide’s Clive Matthew-Wilson [“The Emperor’s New Car”]. The final event of the day was an entertaining and informative presidential-style debate [unlike a team debate, in a presidential debate each speaker has six minutes to say whatever they like about the topic - which in this case was “Driving is so last century”]. The speakers were Dunedin Mayor Dave Cull, Otago Regional Councillor Michael Deaker, Bridget Burdett, Clive Matthew-Wilson and two enthusiastic students [Henry Flood and Chris Sadler]. The evening finished with a delicious supper provided by Countdown.World Sight Day was a resounding success thanks to: Otago Community Trust, Otago Motor Club Trust, DCC, ORC, Allied Press, Ritchies, GoBus, Countdown, Dunedin Public Libraries, Age Concern, Otago Polytechnic, University of Otago, Mobility Scooters Otago, CCS Disability Action, University Book Shop, North East Valley Community Choir, Driving Miss Daisy, Corstorphine Community Hub, Adart Brand Promotion and all our friends who came along to help and participate. – Lynley Hood

Nutrition for the Retina – By Emma SandfordGood nutrition is an incredibly complex matrix of nutrients that must be present in just the right amounts. The digestion and absorption of a nutrient and then it’s onward participation in countless reactions throughout the body, depends intimately on the presence of other nutrients, again in the Goldilocks ‘just right’ proportions. While I have focused on the eye-related nutrients that I mentioned in my last letter, there is no getting away from the fact that a broad array of plant based foods, with a little bit of good quality, organic/home kill meat, a glass of red wine, some fresh caught oily fish [canning destroys the omega 3 fatty acids] and abundant handfuls of herbs and spices, a bit of dairy here and there [not daily] cannot be replaced by taking handfuls of supplements. If however that is the best that can be managed or you prefer to be sure that you have what you need, spend the money on a reputable brand from your health shop and ensure that it has what you need and that it is in a usable form.Our average Western diet is absolutely woeful and various intrinsic deficiencies have lead to the rash of chronic degenerative diseases that plague our society. These include high blood pressure, heart disease, diabetes, cancer, arthritis, Age-related Macula Degeneration, cataracts, elements of glaucoma, chronic degenerative diseases etc. There is a massive over reliance on grains, many people eating one form or another for every meal in a day. Bread was always the poor man’s filler, but with the new hybrids and advent of GMO there is much more gluten [amongst other things] in our wheat. This means it is now possible and [commercially] financially desirable to make bread in minutes, rather than the traditional 24 hours, where genuine fermentation and time were the important factors.Shipments of wheat are sprayed with Glyphosate [Roundup] to stop them sprouting in transit and just before harvesting to help dry the plant in readiness for harvest. This is absorbed into the body of the plant, it can’t be washed off. Please feel free to follow up on

the many diseases linked to the use of glyphosate and its sequestering of minerals in the soil and in the food. So the poor man’s filler has become the poor man’s poison!There are many writers and nutritionists as well as researchers who are coming out in favour of a plant-based diet with fruit, veges, nuts and seeds as the biggest and widest tier of the food pyramid. The Mediterranean diet has been much lauded and as long as your food is ethically, organically or biodynamic-ally grown or better still home-grown, the better off you will be. Plants provide so much more than the well known vitamins and minerals. They provide fibre which helps the body rid itself of all waste products including excess cholesterol. It directly feeds our gut bacteria and actively encourages the thriving of good gut bacteria. This is a far more potent and long lasting way to create a probiotic environment. Good gut bacteria are key to not only our bowel health, but also to our immune system and because of the gut brain axis it impacts heavily on our mental health, Autism and ADHD, allergy, bowel disease etc. [look up the ‘GAPS diet’ etc. by Dr. Natasha Campbell, for autism and mental illness].Plants also provide over 25,000 phytonutrients which the plant often produces as part of it’s own defence mechanism against browsing, attack by fungi and bacteria, as quenching agents against high energy light reactions, confer their colour and more. These have a vast array of functions and benefits in the human body from the well known anti-oxidants to mop up all those highly reactive molecules that arise as a result of our metabolism and the fact that we breathe oxygen in order to combust our food for energy production. These phytonutrients are delicate and are most often destroyed by processing and cooking. Eat as much raw food as you can. Enter stage right…. The green smoothie, throw everything into your blender with some coconut milk or something with fat in it, whiz up and drink it down! Eat as much seasonal variety as possible including edible weeds try looking up http://www.ediblewildfood.com/edible-weeds.aspx. Please do look these up before picking, so that you identify them correctly. At your first pick, take a leaf and flower to a herbalist or a knowledgeable plantsman. This is a great way to make a salad, a stir fry or a herby spaghetti dish colourful and nutritious. There also an array of edible flowers, see the top food sources for lutein [try http://www.eattheweeds.com/edible-wild-flowers/ ].One might aim for being able to tick off 50 different foods [wheat counts as 1 when counting, bread, pasta, Weetbix, muffin etc.], herbs, spices, beverages [Red Wine again *giggles].I would recommend Dr. Libby’s Real Food Kitchen to you. There are lots of sweet treats. It’s the non-refined ingredients that make all the difference. Though she is against the consumption of dairy, I feel that, as long as you aware that it doesn’t cause problems [try 2 weeks off it, then resume and observe the changes] then go ahead and indulge. I make my mashed potato with cream and butter! YUM! It’s what you eat everyday that matters in the long term.Aim to eat raw, unprocessed foods especially unrefined sugars and natural salt [sea-salt or rock-salt], these should be coloured by their mineral content! Aim to eat fermented foods and condiments like sauerkraut and kimchi. Every ancient tradition has their own versions. They tend to be a vitamin C boost, and an aid to digestion as they are acidic and a probiotic.

Pedestrian safety: why we need an inquiry VICTA [Visual Impairment Charitable Trust Aotearoa] is calling for a full government inquiry into pedestrian safety.Dr Lynley Hood, spokesperson for VICTA says: “Successive NZ governments and government agencies have failed to address, or even to recognise, the horror of pedestrian deaths on NZ roads.”

“Between 2006 and 2015, almost four times as many pedestrians [348] as cyclists [90] were killed on NZ roads. Pedestrian deaths among people over 65 [104] also outnumbered total cyclist deaths [90] over that period.”Dr Hood is concerned that the government appears to be in denial about the seriousness of the problem.“Despite overwhelming evidence to the contrary in its own data, the Ministry of Transport claims that walking is one of the safest modes of travel available”Dr Hood points out that elderly pedestrians are particularly at risk.“Between 2006 and 2015, 30% of pedestrian deaths came from the oldest 14% of the population.”“Roading engineers often fail to grasp how dangerous our roads can be for people with limited mobility and poor eyesight.”Dr Hood is also frustrated that the government often blames the victims of pedestrian accidents.“The Ministry’s Crash Facts 2015 blames pedestrian deaths on texting, listening to music, playing games and lying on the road – none of which are indulged in by elderly and disabled people, who just want to cross the road without getting run over.”VICTA wants the government to give pedestrians the same priority as cyclists.“ The NZ Transport Agency has a Cycle Safety Action Plan, and is co-investing more than $350 million in urban cycling infrastructure. But the NZTA has no Pedestrian Safety Action Plan, and makes no mention of any investment in urban pedestrian infrastructure.”“The words ‘pedestrian’ and ‘footpath’ are also absent from Budget 2016 Vote Transport, and from the Government Policy Statement on Land Transport 2015/16 - 2024/25. I can only say I’m horrified that pedestrians don’t get even a mention.”On World Sight Day VICTA launched a petition to parliament for an inquiry into “whether the Ministry of Transport and the NZ Transport Agency have responded effectively to the consistently high road toll among elderly and disabled pedestrians.” Copies of the petition can be downloaded from VICTA’s website: www.visualimpairment.org.nz or ordered by mail from PO Box 5862, Moray Place, Dunedin 9058, or by phone from 0800 20 66 2020.

Research Project: Lighting & Low VisionOn average people with low vision select a light level of about 2,400 Lux for reading. This is far less than most people have available in their homes. There is amazing lighting available these days, so the problem is less with the technology and more with how we understand the interface between the technology and our need for it. When I look at lightbulbs in the supermarket I don’t have much of a clue about Lux, Lumens, or Foot-Candles and their relationships with Wattage – and I don’t think I’m alone in this. Not having this information means we have less light, spend more money than is necessary, and we put our-selves at unnecessary risk of falling and [even worse] not continuing to do the things that we love. The problem lies with not understanding the science that we potentially have at our fingertips. So, with this in mind, we sought funding for a citizen’s research project about the science of lighting for people with low vision. In October in Dunedin we have had 9 Occupational Therapy students: 6 first year volunteers and 3 third-year, on fieldwork placement working with 18 people with low vision. All of us have been trained to use simple hand-held light meters; we have been trialling a Home Environment Lighting Assessment [HELA]; and we have been using the Lux-IQ with everyone who stands still for long enough!

This is a brand new device [patent pending] that allows us to quantify near-vision performance over a broad range of light levels and colour temperatures. The readings can be fed into a web app called Light Chooser, and this can [hypothetically] prescribe the specific task light and bulbs that would best suit the individual. I say ‘hypothetically’ because we have been finding that the U.S. information does not exactly map onto the lighting solutions that we have available here in New Zealand. The students have been discussing what they have learned through using the Lux-IQ: “When we used the Lux-IQ she adjusted the lighting and she was so surprised that she could read. This was great to see how the lighting enabled her to read fluently”.However, sometimes more light is not the solution and the Lux-IQ also makes this clear to the students “When doing the Lux-IQ it was difficult as she still could not read the newspaper even with changes in brightness and colour. She explained that brightness makes it worse for her to see and often causes glare”. There have been lots of opportunities to develop our ideas, lots of people interested in what we are doing, and lots of help along the way. By the end of December we expect to generate a report that will provide the results of the project including the lighting prescriptions and the solutions that we have come up with. If you would like a copy please contact me Mary Butler by email: mary.butler@op.ac.nz

Phase 2 study – Can you help?Editors note: It’s not often we get the chance to be a part of research studies and even less often do we get our mates across the ditch asking for our help! Researcher Dr.Mallika Prem Senthil is looking for about 100 more participants to take part in an online questionnaire … Developing a technologically advanced Quality of Life questionnaire for hereditary retinal diseases.Quality of life has been shown to be severely compromised in people with major blinding retinal diseases such as Age-related Macular Degeneration [AMD] and Diabetic Retinopathy. However, very little is known about quality of life impact of people with hereditary retinal diseases such as Retinitis Pigmentosa [RP]. Studies exploring impact of hereditary retinal diseases on quality of life have been restricted by the lack of appropriate survey questionnaires. To date, only a few questionnaires are available for hereditary retinal diseases. Moreover, all the existing questionnaires are traditional paper-and-pencil based and mostly not validated. These paper-pencil based questionnaires are static, out-dated, and do not provide a holistic measurement of quality of life. A superior strategy is to develop item banks [a large number of questions] implemented via a computer adaptive testing [CAT] system. The CAT system iteratively presents questions based on a patient’s response to previous questions. Thus, the item bank implemented via the CAT system requires fewer questions to provide precise and accurate assessment of quality of life impact. Therefore, a project [The Eye-tem bank] has been designed to develop an item bank for hereditary retinal diseases. This technologically advanced survey questionnaire will revolutionise the way questionnaires are used in ophthalmic research and clinical practice. The Eye-tem Bank project is a collaborative study carried out at Flinders University as a lead organisation and three centres: The Queen Elizabeth Hospital, SA, The Royal Adelaide Hospital, SA, and the Royal Victorian Eye and Ear Hospital, VIC. The study started in 2014 and is ongoing. The Phase 1 study which has now been completed, involved consultation with people who have hereditary retinal conditions through in-depth interviews from all over Australia.

The qualitative interviews were done to explore the influence and impact of hereditary retinal diseases on patient’s overall quality of life. The results of our Phase I study shows that people with hereditary retinal diseases experience a myriad of QoL issues such as difficulty in performing important day-to-day activities such as reading, seeing under different light conditions, driving, shopping, playing sports and using a computer; facing lots of emotional and psychological challenges; concerns about disease progression, outcome and personal safety; experiencing a myriad of visual symptoms; problems with socialisation and interaction with others; problems with mobility and orientation and effect on work and finance. We also found that people with hereditary retinal diseases experience far greater quality of life issues compared to other retinal diseases. The Phase I study results were presented at the National Retina Congress in 2015 at Melbourne.Using phase I data we have developed a pilot survey questionnaire which we are currently pilot testing on people with hereditary retinal diseases using an online survey. This part of the study [Phase 2] has started in July 2016 and is currently ongoing. This study involves answering an online survey about how your eye disease/s and its treatment are affecting you and your life. We are currently looking for participants with hereditary retinal diseases [e.g. Retinitis Pigmentosa, Usher syndrome, Bardet-Biedl syndrome, Rod dystrophies, Cone dystrophies, Stargardt’s disease, Best disease, Fundus Flavimaculatus, Juvenile Retinschisis, vitelliform macular dystrophy, Choroideremia, etc.] to take part in this online survey. People with hereditary retinal diseases are kindly requested to take part in the online survey and help us in this research. People who wish to participate in this survey or who need further information on this please contact: Dr Mallika Prem Senthil, Optometry and Vision Science, Flinders University, [Australia] Phone: +61 8 7221 8708 Mobile: +61 450 755338 email: prem0013@flinders.edu.auEditors note: I’ve just completed the survey. It takes a couple of hours but its possible to do it in multiple sessions if need be. Its done through Survey Monkey so its fully accessible.

Retina Research UpdateIn recent years, Retina New Zealand has granted a summer studentship of $5000 from the proceeds of its Research Fund. For the financial year 2016/17 it was decided by the Executive Committee, to instead support an honours student with a $7000 Honours Scholarship, to undertake a low vision related research project over the course of the 2017 Tertiary year. Its still too early to publicly announce the details yet, but it will be a really interesting and exciting project within the world of low vision. Look out for the full story in the February 2017 issue.

Tech Update: The best of 2016 – by Matt RudlandSeptember and October are always exciting times in the world of tech because that’s when many companies release their new products, and 2016 has been no exception. Over the past 8 weeks Apple have released their new iPhones and iOS software, Google have announced their new Pixel Android phones, the anniversary update of Windows 10 has rolled out and there’s a new version of the Jaws screenreader.APPLE – In September Apple released their two new phones; the iPhone 7 and the iPhone 7 Plus. The iPhone 7 replaces the iPhone 6S and has the same 4.7 inch screen, and the iPhone 7 Plus [with the 5.5 inch screen] replaces the iPhone 6S Plus. Apple will be keeping

the iPhone SE from last year which has the 4 inch screen for those that like a smaller sized phone. In a first for Apple, the iPhone 7 and 7 Plus are both splash and water resistant and have stereo speakers.The big news with the iPhone 7 range is that the headphone jack is gone. But don’t worry because Apple is shipping the new phones with earphones that plug into the “lightning” charger port, as well as a lightning to headphone adapter for those that wish to use their own headphones. The downside to this is that you can’t listen with headphones and charge your phone at the same time, but a company called Belkin has already solved that problem; with an adapter that lets you charge and listen at the same time [$59.99].Apple have also removed the physical Home button from iPhone 7 phones, but have replaced it with the touch sensitive button that has the same look and feel of the previous button and vibrates then you press it. This means it is still accessible and easy to use, but there’s no physical button to wear out. The fingerprint scanner is still integrated into the button and is now faster at reading fingerprints.The new iPhones come with Apple’s new iOS 10 software which offers a range of new Voiceover voices, Colour Filters that allow you to tint the screen different colours including greyscale and three options for different kinds of colour blindness. There is also a pronunciation dictionary so you can teach the iPhone how to pronounce words and a built in CCTV app called Magnifier which uses the camera to magnify text and make it easier to read. iOS 10 can also be installed on all phones in the iPhone 5 and 6 ranges, as well as the iPad 4 and newer, the iPad Mini 2 and newer and the iPod Touch sixth generation. If your device is compatible it will be waiting to install in Settings – General – Software Update [if it hasn’t already updated automatically].[Editor’s Note: New MacOS Sierra version10.12 – has SIRI, Apple Pay and some cool new features]From the Android world Google has announced their two new premium phones called the Pixel and the Pixel XL which have a 5 inch and 5.5 inch screen respectively. The phones come with Android’s new personal assistant called Google Assistant which is an upgrade to Google Now but a lot smarter and more conversational, making it a strong competitor to Siri on the iPhone. For instance if you ask "tell me about my day" it will tell you the local weather, appointments for the day, length of your commute then play news clips from NPR, Fox, News, Bloomberg, and BBC.For now Google Assistant only ships on the Pixel phones, but if you want to try it out, it is built-in to Google’s new messenger app Google Allo so download it from the App Store [Apple] or Play Store [Android] and give it a go.Google are currently subsidising the excellent KNFB Reader app for Android devices. For a limited time it is $35.99, down from $150. If you have a compatible Android phone and would like an app that can take a picture of text and read it out to you, then download it from the Play Store and give it a free trial. You will need at least a 5 megapixel camera and be running android 4.3 or newer. It’s also available for Apple users with iPhone 4S / iPad Air / iPad Mini 3 or newer in the App Store at the full price. Before we leave the world of Android it is important to note that if you have a Samsung Galaxy Note 7, that Samsung have issued a world-wide recall of the phones. There have been some instances of the Note 7 overheating and catching fire, and after trying to fix it without luck, Samsung are asking everyone to turn off the phones and return them for a full refund. Note this only affects the Galaxy Note 7, no other Samsung phones or Galaxy Notes are affected by this issue.

Moving on to adaptive software, Freedom Scientific has just released their latest version of Jaws: Jaws 18. Among the many new features is the new mouse echo feature, which reads out text under the mouse pointer, greater compatibility with the upcoming Zoomtext 11 and support for higher quality Vocaliser Expressive 2.2 Voices.There has been a new update for ZoomText magnification software however it is still not compatible with the Edge browser in Windows 10 and has issues with Internet Explorer 11, so using an alternate browser such as Mozilla Firefox is recommended.In Windows news Microsoft have finished rolling out their Anniversary update for Windows 10, which has an improved Start menu, a new dark theme, a smarter Cortana and the Mail app is now compatible with Jaws 18. The Start menu now shows a full list of all your apps for faster access, instead of needing to click on an All Apps button. The Dark theme is great for those that prefer a white on black colour scheme and can be enabled by going to Settings - Personalisation – Colours, then selecting “Dark” under “Choose your app mode”. Cortana can now respond to natural language requests e.g. “Cortana, send Bob that PowerPoint I was working on last night”. Although still not available in New Zealand you can try it out by setting both your region and language settings to US English and restarting.Microsoft have also announced that they have sold their feature phone division to Foxconn. It is important to note that this is the non-smart phone division, and that they will continue to develop their smartphone Windows 10 Mobile operating system, and support the current Lumia phones. There are also a lot of rumours Microsoft is working on new smartphones with its Surface tablet team, which could see some very high spec, premium Windows phones in the future.That finishes up our overview of the latest tech for November 2016. If you have any questions regarding the compatibility of any software mentioned in this article check with the manufacturer as they regularly post updates on their websites. All information in this article was correct at time of writing, but may be subject to change. Please check with suppliers before upgrading or purchasing new hardware/software.

Kapiti Vision Impaired Persons Group [VIP’s]Over the last 6 months, we have had at least 22 members of our local community gather once a month at our local Community Centre to offer friendship & support to one another and listen to interesting speakers. Our gatherings are preceded by coffee and a light lunch at a local café for any who are able to make it, and about one quarter of our members come to this on any one day. In addition, we have recently started an iPad Group which meets from time to time to learn about using our iPads with specific apps for blind or low vision people. The iPad sessions are co-ordinated by one of our members, hosted by another member and instruction provided by a Blind Foundation IT staff member. We also have a number of ladies who live on their own who regularly support each other through a weekly phone call. At least 3 members of our group regularly represent the interests of low vision people at various community forums and meetings. Members of our group have also instigated the siting of a new pedestrian crossing across a busy road leading to the Paraparaumu Beach shops.Recent speakers or topics have included the work of our local Men’s Shed; a visit to Gallipoli in 2015; a pastor talking about the work his church does among the disadvantaged in Kapiti; Blind Foundation Equipment Display; and a former television weather presenter talking about her life. We have a team of 6 sighted volunteers and normally 2 or 3 come to each meeting to assist with serving of the afternoon tea and reading out information to our members. Without their invaluable assistance our gatherings would not run so smoothly.

The Christmas lunch for the Kapiti VIPs is on Monday 19 December at 12.30 pm.  Each member is asked to bring a small plate of finger food to share with others. The first meeting of the Kapiti VIPs for 2017 is on Monday 16 January at 1.30 pm at the Kapiti Community Centre. – Elizabeth East

Tauranga GroupAt our October meeting we had Emma Sandford who spoke at the AGM in Hamilton. We didn’t have a guest speaker at the November meeting but it was a great chat with everyone who attended. Our December  meeting will be a coffee morning at Sugar Fix – from 10:30 to 12, to finish up the year. We’ll start again in February 2017. As usual on the first Saturday of the month.Norma McKay has been organising the meetings for the last few months with the help and support of Brian Darrow and RaelyThey have been going well and there has been a few new faces which is great – Sara Ash

Support GroupsTAURANGA: When: First Saturday of the month, 10:30am Where: Tauranga Library on the second floor. Sara Ash (07) 577 6526 WAIKANAE: When: 1st Monday of the month Where: Cameo Rooms (Pop In Centre) on Mahara Place. Sue Patterson (04) 293 5174 KAPITI: When: 3rd Monday of the month Where: Kapiti Community Centre Elizabeth East (04) 299 1800 DUNEDIN: When: 4th Wednesday of the month, 1:30pm Where: Dunedin Public Library, 4th floor Dunnington Suite. Lynley Hood (03) 4877 686 We also hold public meetings around the country so give us a call to find out when we’re next in your area.

Retina Youth Support: Retina NZ has a youth forum for 18 to 35 year olds. Retina Youth has its own Facebook group [search "retina youth"] and its own website, creating awareness and discussion on issues that specifically confront young people with degenerative eye conditions. There's lots of fun stuff too, so check it out, it's worth it.Would you like a support group in your area? Retina NZ has support groups in various locations around the country. These groups are open to anyone with sight loss or their family & friends. If you would like to start a group contact Sue on 0800 569 849 (ext 2).

Easy RecipeSultana Crisp[sent in by Elizabeth East]This recipe is easy for low vision or blind people as it uses a cup measure for all of the dry ingredients.  I use one of those plastic measuring cups that you can run a knife across the top to accurately measure each ingredient. 

The biscuits keep well in an air tight container for at least 14 days and they also can be placed in a plastic bag in the freezer, if you want them for a later date.  To make them really crisp, I place them on newspaper for 15 minutes once I take them off the oven tray.  These biscuits make excellent gifts to give to friends at Christmas.INGREDIENTS125gm Butter2 Tbsp Hot Water 1 Tbsp Golden syrup 1 tsp Baking Soda 1 cup Rolled Oats1 cup Sugar1 cup Flour1 cup Coconut1 cup SultanasMETHODInto Microwave safe bowl or jug - chop butter, add water and Golden syrup. Microwave in 3, 30 second bursts or until all melted. Add Baking Soda, stir till foaming (may need 10 second burst in microwave).Add all dry ingredients. Line trays with baking paper. Roll mixture into balls, flatten with fork. Bake at 180deg for 15 minutes or until golden brown.

NoticesNZ Genetic HotlinesRing any of the following free-phone numbers if you want to speak to a genetic counsellor or geneticist about your own diagnosis of RP, macular degeneration or other retinal degenerative disorders.Auckland Genetic Hotline 0800 476123 or 09 3074949 [ext 25870] [Northern Regional Genetic Service] Wellington Genetic Hotline 0508 364 436 or 04 385 5310 Christchurch Genetic Hotline 0508 364 436 or 03 379 1898

Our Values, Vision and MissionOur most important values are Empathy, Respect and Ethical Practice. These ideals underpin our decisions and actions. Our vision is for all people with degenerative retinal disorders to have access to safe and effective treatments, and to the information and support they need at different stages of their sight loss journey We aim to raise public awareness of degenerative retinal disorders, provide accessible information and support to patients and their families, and to contribute towards the development and equitable availability of safe and effective treatments.

Disclaimer & AcknowledgementsThe opinions or position expressed in articles are the author’s own views and do not necessarily express the policy or views of Retina NZ Inc. The products and services featured in Retina Newz are not tested by Retina N Z Inc.Retina New Zealand Inc is grateful to the Blind Foundation, and the New Zealand Lottery Grants Board for helping to fund this newsletter.

How do you like to read your newsletter?Members may receive email versions in addition to a posted copy at no extra cost.Email options: WORD; Accessible PDF; EPUB. Posted options: Large Print; Audio CD.If you would like to receive an email version please email your request to secretary@retina.org.nz [so we have your correct email address]. If you would like to discuss your newsletter options, please phone 0800 569 849 [Ext 4]

[Display Ad] - R.I. 2018Retina International World CongressFeb 7th –11th 2018, Auckland, NZFor More Info Visit Our Website: RIWC2018.orgOr Email: ri2018@retina.org.nz

Our PublicationsYour Blue Book is our 40 page A4 guide to coping with vision loss with all its daily challenges. You can get a FREE copy by contacting us on 0800 569849 or secretary@retina.org.nz “Understanding …” series Adapted from RNIB info for relevance in NZ. There are currently 4 booklets; RP, AMD, Cataracts and Retinal Detachment.Other resources: We have Amsler Grids [A5 Card], business cards and the “Where do you turn” booklet [an overview of Retina NZ], which are useful handouts for eye professionals when talking to clients. Ask about our updated version of the “Good Look Book” – a compilation of stories by people living with sight loss and the unique experiences of their sight loss journey.Retina Youth - A place for us is a DL sized colour brochure full of info and stories for young people by young people. Includes links to Facebook and Retina Youth website.

[Back Cover Display AD]Where do you turn when you’re losing your sight?Retina NZ – Low Vision Support & InformationWe have a range of FREE publications full of useful information about specific eye conditions or coping with vision loss.Our Peer Support volunteers are contactable by phone to answer any of your questions, or simply to listen to what you need to talk about – they understand. Contact them direct on 0800 233 833

In various areas around the country we have support groups who meet to support each other on their sight loss journey.For all enquiries contact us on 0800 569 849[end]