THE ACHIEVER Retina Australia Victoria SPRING EDITION – SEPTEMBER 2011 ROSS HOUSE, 4TH FLOOR 247 - 251 FLINDERS LANE MELBOURNE VIC 3000 PHONE (03)9650 5088 FAX (03) 9639 0979 Email: support@retinavic.org.au Web site: www.retinavic.org.au SUPER SPRING NEWS * Meet our young ambassadors * Handy air travel tips * News from the office * Research update INSIDE FROM THE PRESIDENT FEATURE: RA YOUTH AMBASSADORS AIR TRAVL TIPS PEDESTRIAN SAFETY PROJECT FDA WARNING: VALPROIC ACID RESEARCH UPDATE: CLINICAL TRIAL RECRUITMENT FOR STEM CELL TREATMENTS ENHANCING SURVIVAL OF PHOTORECEPTOR CELLS GENE THERAPY SUCCESS IN USHER SYNDROME TYPE 2D QUESTION TIME ANNUAL CARER SUPPLEMENT FURTHER EDUCATION BURSARIES MEDIA ACCESS BETTER START FOR CHILDREN WITH DISABILITIES LAST WORD Beginning of article FROM THE PRESIDENT – Leighton Boyd 2012 INTERNATIONAL CONGRESS In the last week of August I received a copy of an invitation to the 17th Retina International Congress which will be held at the Hotel Grand Elysee, in Hamburg, Germany, during the weekend of 14-15 July 2012. The hosts will be Pro-Retina Germany and Retina International and the title of the congress is “Gateway to Vision”. The invitation is open to all people who are either personally affected, or who have someone in their family, or circle of friends, affected by a rare retinal disease or age-related macular degeneration. It is also open to clinicians or scientists in these fields. The final arrangements and program are still being planned. However, the invitation indicates that presentations will cover the most up-to-date international research. The congress will also deliver the latest information related to diagnostics, therapy and disease management for retinitis pigmentosa, age-related macular degeneration, Usher Syndrome, Bardet-Biedl Syndrome, Stargardt’s Disease and other related retinal diseases. If you are interested in attending, please do not hesitate to contact the office by phone or email, so that we can let you know any relevant information as soon as it comes into the office. Alternatively, you can keep abreast of the developments of the program and arrangements for the congress by checking the congress website regularly. The website address is www.retina-international-2012.de. The registration fee for the 2- day congress is 120 Euro, or approximately $165.00. Having attended Retina International Congresses in the past, I can thoroughly recommend them to you, not only for the information and knowledge gained, but for the friendships developed with people affected by retinal disease from all parts of the globe. 2011 ANNUAL GENERAL MEETING We are currently in the process of sending out the notice of meeting for our forthcoming Annual General Meeting (AGM) to be held on Saturday 22 October at Ross House. This event is always quite exciting because of the presentations given by our speakers who are always well versed in their knowledge of Australian, and world-wide research. This year will be no exception with Associate Professor Erica Fletcher from the University of Melbourne, and Dr Lauren Ayton of the Centre for Eye Research Australia and Bionic Vision Australia. Please make attending this event a priority so that you can hear the most up to date research information as well as have the opportunity to ask those questions that you have always wanted to. At the AGM, we will also be electing the office bearers and members of the Board who will serve for the next twelve months. Board members must be financial members of the Association. These positions are open every year and nominations must be made in writing, signed by two financial members as well as the nominated candidate, and lodged with the secretary at least 14 days prior to the AGM. During the previous two years the Board has been operating with less than its full complement of eight members and I urge you all to give some thought to your capacity to serve Retina Australia Victoria by being prepared to take on the role of a Board member. The Board currently meets every second month, on a Tuesday evening, and at other times by arrangement, and it would be good to share the workload by having some additional Board members. If you are interested in finding out more about what this role entails, please do not hesitate to phone me at any time on 0417 566 899. STAFF CHANGE IN OFFICE & CHANGE OF HOURS Recently we have had a change to our office staff and I would like to welcome Jun Xu who has taken over from Kristen Xing as our Financial and Administrative Officer. Jun will be in the office every Tuesday and Thursday and I am sure you will all make her feel welcome. Kristen provided great support to me and all members during her seven months in the office and although she enjoyed working with us, she has decided to return to China to see her family and consider her future options. Kristen commenced working with us after completing a Masters Degree in Accounting and Financial Management as an international student at Latrobe University, and consequently has not been home for over eighteen months. I would like to wish Kristen all the best for the future and to thank her for her assistance. We hope that she will pay us a visit if she ever comes back to Australia. Please note that there will be a slight change in the office hours from the start of September. In reality this is a half hour difference to the hours you have been used to. The office will now be open between 9.30 am and 3.00 pm every Tuesday and Thursday. However, as you would appreciate, messages can be left on the answering machine or sent by email, at any time and we will endeavour to respond to your enquiry as quickly as practicable. MEMBERSHIP RENEWALS We would like to thank very much all members who have recently sent in renewal forms and subscriptions for the current financial year. This money pays for the running costs of our office including our rent, telephone, printing, postage and the salary of our office staff member who works ten hours per week. Without your annual payments we would not have an office, nor be able to continue to support you, or assist people who have been newly diagnosed with a retinal disease and need information and peer assistance desperately. Hence we are indebted to you for your quick response. For those members who have not had the time to send back your renewal and subscription, it is not too late. If you have misplaced the form, please phone the office on 9650 5088 and let Jun know and she can send another, or if you prefer she can complete the form whilst you are on the telephone and take your payment by credit card. Forms can also be sent by email if this is easier for you. DONATIONS This year in response to our letters of request for a donation towards Australian research, we have collected in excess of $25,000 so far. As well, many members have made a donation in addition to their membership subscription. All of these donations are greatly appreciated and I would like to thank you all most sincerely for your contributions. As you know, all donations in excess of $2.00 are tax deductible and receipts are issued, along with a letter of thanks, to all donors. As mentioned in previous correspondence and editions of the Achiever, donations from our members and friends have enabled significant research breakthroughs to date through our support of Australian researchers. Hopefully these donations, and those still to come, will likewise contribute to finding another significant discovery, treatment or cure for inherited retinal diseases. Thank you once again. TELELINK I am pleased to report that our fortnightly Telelink has been a great success with many topics being discussed. The participants are a casual and relaxed group of people who just like to have a good chat. During the previous few months we have also had guest speakers who have joined the telelink to discuss such topics as library issues, the latest technology, guide dogs, orientation and mobility. Anyone wishing to join this group, who meet every second Tuesday between 10.00 am and 11.00 am, should contact me at the office. This is a free service. NOVEMBER SOCIAL LUNCH Over the years we have had a number of different social occasions including morning or afternoon teas, picnics, dinners, auctions, day tours, and so on. This year we have decided to hold a lunch on Saturday 26 November at the Spaghetti Tree Restaurant, 59 Bourke Street, Melbourne, commencing at 12 noon. This Italian restaurant is fully licensed and menu prices generally range between $15 and $30. It would be really wonderful if you could put this date aside and let Jun know by email, or telephone, by Tuesday 15 November, that you are able to come along. We are happy for you to bring partners and other family members. It is always a great occasion when our members have the opportunity to meet each other and to mingle over a meal. The Board members and I are looking forward to meeting you at the Spaghetti Tree. CONCLUSION Thank you all very much for your support and assistance during the previous year. I look forward to speaking to you at the Annual General Meeting or at the social lunch in November. End of Article Beginning of Article FEATURE: Our feature article this edition is a piece written by a member from our counterpart organisation in NSW, about her role in representing Australia along with two other inspiring young women from other states. RA Youth Ambassadors Recently Karen Junge (RA Qld), Melanie Chatfield (RA WA) and myself (Liz Wheeler, RA NSW), were asked to be Retina International youth ambassadors representing Australia. Ambassadors need to be suffering an inherited retinal disease and be willing to put some time and effort into discussing and raising awareness for youth issues relating to our conditions. Our first task arrived in March when we where asked to contribute some suggestions for the Retina Youth Program, a part of the 2012 Retina Youth Congress. It was very exciting to receive emails from all across the world from others suggesting topics of interest. For Australia we put forward the following suggestions. Social and Confidence: * Understanding body posture/body language – how to hold yourself with confidence and interact with other people. * Learning how to ask for help – building confidence, strong networks and friends. * Options for being physically active/interesting recreational activities that you can do with a vision impairment – examples being Brazilian jui jitsu, tango dancing, skiing. Family Planning, including: * Understanding genetics - what is known and available to determine feasibility of passing on the disease. * Other options for those wishing to become parents, and overcoming obstacles with a disease. * Shared stories and experience. Current parents can share benefits, fears, difficulties. Financial Planning: * What to consider when faced with a degenerative illness that may limit your career span or earning capacity in the future. Both Melanie and I are hoping to get across to the 2012 Retina International Congress so we can network, learn as much as we can and then share all this at the Retina Australia Conference in Sydney in October 2012. We have also set up a group called ‘Retina Australia – Youths’ on Facebook. It is a closed group for youths between the ages of 18 and 35 who suffer an inherited retinal disease. The group will allow us to share information on youth issues fed through the international group and also allow us in Australia to build a support network. If you meet the criteria we encourage you to join. Cheers, Liz End of Article Beginning of Article AIR TRAVEL TIPS FOR PEOPLE WITH DISABILITY Thousands of people with all types of disability regularly travel by air. However, you may not know what to expect, particularly if it is your first time flying or you are travelling on a different airline. Service and travel procedures may vary between airlines and airports. Planning your travel and considering the tips below may help make your journey smoother and more enjoyable. Many airlines and airport operators have developed a Disability Access Facilitation Plan which outlines how they meet the needs of travellers with disability. Many airlines and airport operators also have information on their websites for passengers with a disability. To prepare for your journey, consider the following: * What do you need to find out or let the airline know? * What can you take with you? * What assistance can airport/airline staff provide? * What can you do to make your trip go smoothly? Before Booking a Flight * Are you required to provide evidence of fitness to travel? If unsure, check with the airline. * Find out what assistance the airport/airline’s staff can offer you. * Does the airline offer Companion Card rates? If you need a carer, they may be able to travel at a reduced rate. * Once you have chosen an airline, find out their disability related information on their website. * You may not be able to book online if you are not able to register the assistance you need. Booking Your Flight * When booking, advise that you have a disability or medical condition. * You may need to give the dimensions and weight of any aids you need to take with you. * Discuss travel insurance with your travel / booking agent. * If you have connecting flights and have to wait in an airport, consider if you need use of any aids during this stopover. If the stopover is short, this may not be possible. * Ask the travel / booking agent what the process will be when you get to the airport. * Ask whether you check in electronically or at the check-in counter. * Ring the airline a day before your flight to confirm that your needs for the flight have been noted. At the Check-in Counter * Allow additional time to check-in and for airport/airline procedures. * Have you requested that you, your travelling companion, friend or carer are sitting together? * Do you need to request an aisle seat on the plane where the armrest lifts up? * Advise check-in staff if you need help to get onto the plane or to find your way. * Advise airline staff if your seat is located at the emergency exit as this may not be permitted as to be seated in this area of the plane, you need to be able to assist in an emergency. Staff will allocate you a different seat. * Have you thought about toilet considerations given the length of the flight? * At your destination you may need to remind airline staff to assist you with your belongings. * Keep your plane ticket and passport handy if travelling internationally. * If you are travelling interstate and will be travelling by taxi while away, find out what reciprocal taxi subsidy arrangements apply in the state you are visiting. Source: Adapted and summarised from a brochure titled “Prepare for Take Off” produced by the Disability Services Commission, WA. The full version can be accessed at: http://www.disability.wa.gov.au/aud/venuesfacilities.html End of Article Beginning of Article We have been asked to circulate this request for participants to respond to this survey because the team need at least 600 Victorians to contribute to this research project. Some of you will also receive this request from other organisations because the survey team are trying to reach as many blind or low vision Victorians as possible in order to maximise participation levels. If you are interested in assisting, use the contact details provided below. PEDESTRIAN SAFETY RESEARCH PROJECT Are you blind or have low vision and live in Victoria? Are you interested in participating in the state’s biggest ever research project on the experiences of you as a pedestrian? Vision Australia, Guide Dogs Victoria and Blind Citizens Australia are working together to better understand what is happening on roads and footpaths across Victoria for people who are blind or have low vision. They hope the results of the report will help to make it safer on our roads and footpaths but need people to respond. With funding from VicRoads and the Transport Accident Commission the Monash University Accident Research Centre has been commissioned to produce a report on pedestrian experiences for Victorians who are blind or have low vision, as well as their decision making and strategies they use to cross the road. Questions and Answers About the project - The survey is part of a research project being undertaken by Monash University Accident Research Centre to better understand the experiences and decision making of Victorians who are blind or have low vision. We expect the survey will take about 20 minutes to complete and will provide valuable information on the experiences, decision making and strategies that people use as pedestrians. Participation in the survey is voluntary; there is no obligation to participate. The survey will be undertaken by trained staff. Your identity will be protected and any information collected during the survey is strictly confidential. When is it happening? Register today and you will be contacted during the month of October by survey staff. What will I be asked and what will the information be used for? During the survey you will be asked a series of questions that relate to your demographic profile, walking patterns, any aid or assistance you utilise as a pedestrian, whether you have received any Orientation and Mobility Training, and whether you have been involved in an accident with a vehicle and if so the circumstances.  The information will be used by Monash University to produce their report. Will I be paid for this? No. Unfortunately the necessary funding is not available to be able to pay people for their participation in the survey. How do I register? You can register by calling 1300 84 74 66 or emailing pedestrian@visionaustralia.org and giving your name and phone contact – and the survey team will be in contact during October. End of Article Beginning of Article FDA WARNING ON USE OF VALPROIC ACID Valproic acid is used in a clinical trial to influence the course of Retinitis Pigmentosa. Retina International is aware that a number of people are taking the drug self-administered and therefore would like to communicate the following warning statement issued by the Food and Drug Administration (FDA). The clinical trial with valproic acid is still ongoing and no results are available at present and therefore persons taking this drug to slow down the natural course of RP should discuss this with their ophthalmologists and physician. Generally speaking it is not advised to use a drug before the publication of the results and respective registration by the authorities. Exception made for persons being in a clinical trial where all these safety issues are carefully discussed. Valproate Products: Drug Safety Communication - Risk of Impaired Cognitive Development in Children Exposed In Utero (During Pregnancy) Including valproate sodium (Depacon), divalproex sodium (Depakote, Depakote CP, and Depakote ER), valproic acid (Depakene and Stavzor), and their generics. ISSUE: FDA notified healthcare professionals that children born to mothers who take the anti-seizure medication valproate sodium or related products (valproic acid and divalproex sodium) during pregnancy have an increased risk of lower cognitive test scores than children exposed to other anti-seizure medications during pregnancy. This conclusion is based on the results of epidemiologic studies that show that children born to mothers who took valproate sodium or related products throughout their pregnancy tend to score lower on cognitive tests (IQ and other tests) than children born to mothers who took other anti-seizure medications during pregnancy. See the Drug Safety Communication for a data summary and additional information. BACKGROUND: Valproate products are FDA-approved drugs to treat seizures, and manic or mixed episodes associated with bipolar disorder (manic-depressive disorder), and to prevent migraine headaches. They are also used off-label (for unapproved uses) for other conditions, particularly for other psychiatric conditions. RECOMMENDATION: Healthcare professionals should inform women of childbearing age of the increased risk for adverse effects on cognitive development with prenatal valproate exposure, and should continue to counsel women of childbearing potential taking valproate about the increased risk of major malformations, including neural tube defects, when valproate is used during pregnancy. In addition, healthcare professionals should weigh the benefits and risks of valproate when prescribing this drug to women of childbearing age, particularly when treating a condition not usually associated with permanent injury or death. Alternative medications that have a lower risk of adverse birth outcomes should be considered. Patients should not stop taking valproate without talking to a healthcare professional. Source: Retinal International, 30 June 2011. End of Article Beginning of Article RESEARCH UPDATE: Clinical Trial Recruitment Underway for Stem Cell Treatments Back in November last year, when Advanced Cell Technology (ACT), a biotechnology company, got the OK from the U.S. Food and Drug Administration to move ahead with the first-ever human studies of retinal-disease treatments derived from human stem cells, it had yet to confirm study sites, which also needed internal approvals. ACT has announced that the second of two Phase I/II clinical-trial sites received institutional review board (IRB) approval, thus clearing the way for the recruitment of 24 participants afflicted with either dry age-related macular degeneration (AMD) or Stargardt disease, a juvenile form of macular degeneration—both of which cause progressive, devastating vision loss. An IRB is an independent committee of experts charged with ensuring that a study site meets established standards for safety and ethics in human research. The Jules Stein Eye Institute at the University of California, Los Angeles, has received IRB approval, followed by the Casey Eye Institute at Oregon Health and Science University (OHSU) in Portland, Oregon, in May. ACT’s studies, involving the transformation of embryonic stem cells into healthy retinal cells, will focus primarily on safety and tolerability of the treatments. “It’s exciting to see that ACT is ready to start groundbreaking studies in the development of stem cell therapies for retinal diseases,” says Stephen Rose, Ph.D., chief research officer, Foundation Fighting Blindness. “ACT’s treatments focus on dry AMD, which affects more than eight million people aged 50 and over, and Stargardt disease, which robs children and young adults of vision and for which there is no treatment or cure. Stem cells have the potential to restore vision in people with the most advanced retinal disease.” The Foundation funds approximately $2 million annually in cell and stem-cell-based research. Since 1984, the Foundation has supported Casey Eye Institute with a Centre grant. This has provided infrastructure support that makes it possible for the Centre to perform trials like the ACT trial. Since the 1980s, FFB has funded many preclinical studies that helped make ACT’s clinical trial possible, including those conducted by Dr. Ray Lund, an innovator in stem cell research. Dr. Lund, who has served as a consultant for ACT, says the results of the company’s preclinical stem cell studies were phenomenal and, thus, bode well for the clinical studies. ACT’s treatment transforms human embryonic stem cells into retinal pigment epithelial (RPE) cells, which degenerate in several retinal conditions, including Stargardt disease and age-related macular degeneration. RPE cells provide essential support for photoreceptors, the cells that provide vision. By placing healthy RPE cells in the retina, researchers believe they can save photoreceptors and slow or halt vision loss. Source: Foundation Fighting Blindness, June 2011. End of Article Beginning of Article Enhancing Survival of Photoreceptor Cells In-Vivo Using the Synthetic Progestin Norgestrel Source Cell Development and Disease Laboratory, Biochemistry Department, Bioscience Research Institute, University College Cork, Cork, Ireland and Department of Genetics, Smurfit Institute of Genetics, Trinity College Dublin, Dublin, Ireland. Abstract Retinal degenerations such as Retinitis Pigmentosa remain difficult to treat given the diverse array of genes responsible for their aetiology. Rather than concentrate on specific genes, our focus is on identifying therapeutic avenues for the treatment of retinal disease that target general survival mechanisms or pathways. Norgestrel is a synthetic progestin commonly used in hormonal contraception. Here, we report a novel anti-apoptotic role for Norgestrel in diseased mouse retinas in vivo. Dosing with Norgestrel protects photoreceptor cells from undergoing apoptosis in two distinct models of retinal degeneration; the light damage model and the Pde6b(rd10) model. Photoreceptor rescue was assessed by analysis of cell number, structural integrity and function. Improvements in cell survival of up to 70% were achieved in both disease models, indicating that apoptosis had been halted or at least delayed. A speculative mechanism of action for Norgestrel involves activation of survival pathways in the retina. Indeed, Norgestrel increases the expression of basic fibroblast growth factor which is known to both promote cell survival and inhibit apoptosis. In summary, our results demonstrate significant protection of photoreceptor cells which may be attributed to Norgestrel mediated activation of endogenous survival pathways within the retina. Researcher’s Comments Professor Tom Cotter, who led the team, said: “The drug seems to work by stimulating the production of a protein survival factor called FGF from neighbouring cells in the eye and this helps the light-detecting cells to survive and the animals to see. FGF binds to the surface of the light-detecting cells and sends a signal to their DNA to up-regulate strong cells’ survival pathways. In other words, it ‘beefs up’ the cells, makes them stronger and better able to resist the destructive effects of the damaged gene that causes the disease. At the moment, we still don’t know if the drug will also work in humans.” The scientists hope to begin a study next year to see if the protective effects of the contraceptive that are seen in animal models are also experienced by humans, and the research will be extended to other eye conditions such as glaucoma. Source: Doonan F, O’Driscoll C, Kenna P, Cotter TG, Journal of Neurochemistry 118, 915-927, 20011; The Irish Times September 1, 2011. End of Article Beginning of Article Gene Therapy successful in usher syndrome type 2d model Researchers from the University of Utah have used gene therapy to correct the disease-causing genetic defect in the retinas of mice with Usher syndrome type 2D (USH 2D), a form of combined deafness and blindness in humans. While more laboratory work needs to be done, the advancement is an important step toward moving the treatment into a clinical trial. Usher syndrome is an inherited condition that causes defects in the function of cilia, tiny hair-like structures that act like a transportation system for proteins and biochemicals essential to the proper functioning of photoreceptors and cells of the inner ear. In people with USH 2D, a genetic defect leads to dysfunction of the cilia and, ultimately, vision and hearing loss. Led by Dr. Jun Yang, the Foundation-funded research team developed a safe, manmade virus to deliver copies of normal USH 2D genes to the photoreceptors of the affected mice. The treatment was injected under the retina where it was absorbed by the photoreceptors. Tests revealed that copies of the therapeutic USH 2D gene reached photoreceptors and restored function of the cilia. The virus used for therapy delivery – an adeno-associated virus, or AAV – is similar to AAVs used in other gene therapy lab studies and clinical trials. One example is the series of landmark clinical trials that have restored some vision in more than 40 children and young adults with the early-onset retinal disease known as Leber Congenital Amaurosis. Dr. Yang said that while the treatment restored ciliary function, retinal degeneration and vision loss in the USH 2D mouse model doesn’t occur until 28 months, which is old for mice. So she and her team are developing mice that live for at least that long to verify the treatment prevents vision loss. Usher syndrome affects hundreds of thousands around the world. There are three primary types of the disease — Usher syndrome type 1, 2 and 3 — and several genetic variations, represented by letters. People with USH 2D generally have moderate, non-progressive hearing loss at birth and variable, progressive vision loss from retinitis pigmentosa that becomes apparent in adolescence or adulthood. Source: Foundation Fighting Blindness, August 25, 2011. The mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases. End of Article Beginning of Article Question Time with Barry Smerdon In this edition, Barry Smerdon has kindly agreed to volunteer for Question Time. 1. What’s your earliest memory? When I was five years old, stepping into a swamp that was covered with red scum, thinking it was just dirt. My father pulled me out, I was coming up for the third time, I guess my sight was letting me down even then. 2. What’s your idea of a good time? Going to lunch with my wife and enjoying my children and grandchildren. 3. What’s your ideal holiday destination? Over the last few years we have spent time in Sydney, at Manly, we just love the atmosphere and shops and of course the ocean 4. Who inspires you? My TAFE teacher, who is battling with a terminal brain tumor, but she still makes time to encourage others. 5. What makes you angry? Knowing there is so much poverty in the world and on the other hand so much extravagance. 6. What’s the hardest thing you’ve ever done? Having to tell my family I was losing my sight and also my job. 7. What’s the best thing you’ve ever done? Meeting my wife and getting married, also working sight impaired for 25 years. 8. What do you like about Retina Australia (Vic)? They do a great job and this organization represents the hope we have in finding a cure for retina diseases. 9. If you could change one thing about the world, what would it be? I guess to see people more concerned with others and less concerned with themselves. 10. What’s the most important thing you’ve learnt about life? It’s not all about me, and it doesn’t matter what the circumstances are, it’s a great journey so enjoy it. End of article Beginning of Article ANNUAL SUPPLEMENT TO BETTER SUPPORT CARERS Below is a joint Media Release issued on 1 July from the Minister for Families, Housing, Community Services and Indigenous Affairs, the Hon. Jenny Macklin, and the Parliamentary Secretary for Disabilities and Carers, Senator Hon. Jan McLucas. From 1 July, more than 530,000 carers across Australia will receive a $600 boost to help relieve the financial pressures of caring for a loved one. Carers across Australia will share in $485 million in Carer Supplement payments. The annual $600 Supplement will be paid to people who receive: * Carer Payment; * Carer Allowance; * both Wife Pension and Carer Allowance; * both Department of Veteran's Affairs Partner Service Pension and Carer Allowance; and * Department of Veterans' Affairs Carer Service Pension. Recipients of Carer Allowance will receive the $600 supplement for each person they care for. This means that if a person is in receipt of Carer Allowance and Carer Payment (or Wife Pension, Department of Veterans' Affairs Service Pension or Carer Service pension) they will qualify for two Carer Supplement payments, with an additional payment for each extra person they care for. The annual Carer Supplement gives carers certainty about the level of assistance they receive each year, and assists with budgeting for any unforeseen costs. Also from today, about 136,000 carers who receive Carer Allowance (child) will receive the annual $1000 Child Disability Assistance Payment for each child they care for. The Australian Government values the enormous social and economic contribution of carers all over Australia who are caring for loved ones with disability, mental illness or other medical conditions and the frail and aged. The Government's commitment to deliver improved support and greater recognition for carers is also reflected in Carer Recognition legislation, passed in October 2010, and in the National Carer Strategy, currently being developed in consultation with carers, state and territory governments, peak organisations and service providers. The National Carer Strategy will formally acknowledge the vital role of carers and represent the Government's long-term commitment to improving support for Australia's 2.6 million carers. End of Article Beginning of Article Vision Australia's Further Education Bursary Each year Vision Australia awards bursaries to tertiary students who are blind or have low vision consisting of adaptive technology such as CCTVs, laptops, screen reading and magnification software. Such technology enables easier access to course materials. Vision Australia's Further Education Bursary aims to assist clients who would not otherwise be able to afford adaptive technology, thus increasing their ability to participate in further education. Since 1996 220 bursaries have been awarded by Vision Australia to students studying a broad range of disciplines - from Arts and Music to IT and Business. Each year a Victorian Bursary Recipient who is judged by the selection committee to best display a need for the equipment and ability to be successful in their studies will also receive the Fairhall Memorial Scholarship of $150. Who is eligible? To be eligible, applicants need to: * Be an Australian citizen or permanent resident of Victoria, New South Wales, the Australian Capital Territory, Queensland, the Northern Territory or Tasmania. * Be (or become) a client of Vision Australia. * Demonstrate the need for financial assistance to purchase adaptive technology. * Be applying for, or enrolled in, a tertiary course graded Certificate IV or above. * Be available to attend a presentation ceremony in May. How to apply? To apply for a bursary, applicants need to: * Complete an application form - download available from the start of August at www.visionaustralia.org.au/bursary * Have a bursary specific adaptive technology assessment with a Vision Australia consultant. * Provide some documentary evidence (outlined in the application form). Applications are treated in the strictest confidence. Important dates Applications open in August and close at the end of October. Recipients are selected in December, equipment is purchased and delivered after proof of enrolment has been provided (around March) and there are presentation ceremonies in May. For more information contact: Max Bini, Tertiary Education Consultant, Freecall: 1300 84 74 66 Direct line: 03 8378 1223 Email: max.bini@visionaustralia.org Source: Vision Australia, www.visionaustralia.org End of Article Beginning of Article MEDIA ACCESS Media access refers to how audiovisual media content can be used, read or viewed by people with disabilities, particularly those who are blind, vision impaired, deaf or hearing impaired. This includes access to television, DVDs, the internet and digital technology, as well as access in the classroom, cinema and the arts. Media Access Australia is Australia’s only independent not-for-profit organisation devoted to increasing access to media for people with disabilities. Media Access Australia works to increase awareness and promote use of access solutions such as audio description for people who are blind or vision impaired and captioning for people who are deaf or hearing impaired. Audio description is the auditory narration of visual representations such as television programs, films and live performances. During gaps in dialogue, it describes visual elements such as scenes, settings, actions and costumes. Audio description is found on TV and DVDs as a separate language track or is accessed by using audio description equipment at a cinema or live performance. Captioning is the text version of speech and other sound that can be provided on television, DVDs, via the internet, and at cinemas and theatres. It is usually displayed on the bottom of a video screen or on a separate screen and in some cases is positioned to show which character is speaking or where the sound is coming from. Colouring may also be used to distinguish between sounds. During July 2011, a total of 87 new DVD titles were released with 30% of these having audio description and 53% with some form of captioning. Some of the DVD titles with audio description include: Beastly; Big Mommas; The Green Hornet; The Mechanic; Rabbit Hole; Season of the Witch; True Grit; No Strings Attached; Tunnel & Yogi Bear. These titles and many more can be found in the audio described DVD database: http://www.mediaaccess.org.au/dvds/dvd_database Source: www.mediaaccess.org.au End of Article Beginning of Article A Better Start for Children with a Disability The Better Start program for Children with Disability commenced on 1 July 2011. Please find below some information provided by the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) about the scheme. Under the Australian Government’s new Better Start for Children with Disability (Better Start) initiative, children aged under six years who have been diagnosed with moderate or greater sight or hearing impairments including deafblindness, Down syndrome, cerebral palsy or Fragile X syndrome will be able to register to access early intervention funding of up to $12,000 (to a maximum of $6,000 per financial year). From 1 July 2011, funding will be available for services such as speech pathology, audiology, occupational therapy, physiotherapy, psychology and orthoptics. Families will have until their child turns seven to use the early intervention funding. The Better Start initiative also includes a one-off payment of $2,000 for eligible families living in outer regional and remote areas. As access to services is limited for these families, this payment will assist with travel, home visits and similar expenses. Eligible children can register for the Better Start early intervention funding by contacting the Registration and Information Service, managed by Carers Australia. A number of new Medicare items are also being introduced as part of the Better Start initiative. The new items will be available for children up to the age of 15 provided their treatment and management plan is in place before the age of 13. Families will be able to access the new Medicare items from 1 July 2011. The Medicare component of the Better Start initiative is being implemented by the Department of Health and Ageing and further information will be available at www.mbsonline.gov.au and www.health.gov.au Further information about the Better Start initiative can be obtained as follows: Website: www.fahcsia.gov.au/betterstart Phone: 1800 989 530 Email: Better.Start@fahcsia.gov.au   End of Article Beginning of Article Last Word The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart. Be of good cheer. Do not think of today’s failures, but of the success that may come tomorrow. You have set yourselves a difficult task, but you will succeed if you persevere and you will find a joy in overcoming obstacles. HELEN KELLER, 1880 - 1968 End of Article Beginning of Article CHANGE OF ADDRESS OR OTHER DETAILS To advise change of address or name, please enter your new particulars below. Then mail the whole of this page, which includes your existing particulars, to: Retina Australia (Vic) Inc., 247–251 Flinders Lane, MELBOURNE VIC 3000, Fax to 03 9639 0979 or email to support@retinavic.org.au Name. New Postal Address. Telephone/s. New Email. End of Article Beginning of Article DISCLAIMER: Views expressed in this publication are not necessarily those of Retina Australia (Vic) Inc. Retina Australia (Vic) Inc accepts no responsibility and disclaims all liability for such views as well as for any information contained in articles and summaries of research reports, including but not restricted to, the use of pharmaceuticals or other products, items of equipment or practices. Retina Australia (Vic) Inc strongly suggests that persons seek advice from their medical practitioners before adopting any changed procedures, practices or products. End of Article ………….. POSTCODE: …………….. TELEPHONE/S: …………………………………………………………… NEW EMAIL: ………………………………………………………………. If undeliverable, please return to: Retina Australia (Vic) Inc. 4th Floor, Ross House 247 – 251 Flinders Lane, Melbourne, VIC 3000 www.retinavic.org.au “The Achiever” Print Post Approved PP33 1088/00107 RATHEACHIEVERPage 19 RETINA AUSTRALIA (VIC) INC.