THE ACHIEVER Retina Australia Victoria SUMMER EDITION – DECEMBER 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 BUMPER CHRISTMAS EDITION Local and International News Insightful Member Feature Article Substantial Grants Overseas Advances Research Merry Christmas and Best Wishes for 2012! INSIDE FROM THE PRESIDENT THE AUSTRALIAN CHILDHOOD VISION IMPAIRMENT REGISTER CAMPAIGN FOR A NATIONAL DISABILITY INSURANCE SCHEME MORE ACCESSIBLE INFORMATION GYMNASTICS FOR CHILDREN IAPO CALLS FOR URGENT ACTION UN CRPD MEDIA RELEASE WHAT IS AUDIO DESCRIPTION? FEATURES: HIDDEN FACE OF GRIEF AND LOSS ROBBING ‘EM BLIND RESEARCH UPDATE: GENE THERAPY FOR LCA GENABLE TECHNOLOGIES FUNDING ROLE OF VITREOUS IN AMD ROLE OF NEUROPROTECTIN D1 CLRN1 MUTATIONS LINK TO RP ROBOTIC SEEING-EYE DOGS GRANT FOR RESEARCH IN UK PRODUCT PAGES QUESTION TIME LAST WORD Beginning of article From the President – Leighton Boyd Another year has flown past and as I sat down to compose this last president’s report for the year, I reflected on how successful 2011 has been in terms of research into retinal diseases and how much our hope for a future treatment or cure is starting to become a real possibility. It is very exciting to be involved at such a time. 2011 ANNUAL GENERAL MEETING Our guest speakers, Associate Professor Erica Fletcher from the University of Melbourne, and Dr Lauren Ayton of the Centre for Eye Research Australia and Bionic Vision Australia, spoke to the attendees about their personal research as well as the interesting results being achieved globally. Erica spoke about gene therapy, pharmaceuticals and stem cell therapy and Lauren spoke about the Australian “Bionic Eyes” and other devices which are being developed worldwide. Both researchers emphasised that there is still much work to be done as there will not be one cure or treatment for each of the known retinal diseases as people are affected in different ways. Even simple things like the shape of an eye can mean that a specific treatment is not suitable. Similarly it is thought that one type of bionic eye device will suit some people and not others. I am indebted to Erica and Lauren for giving up their Saturday afternoon to come and speak so eloquently to us and for spending significant time after the meeting answering people’s individual questions. Everyone felt extremely fortunate to be given the most up-to-date research information in very clear and understandable terms. At the AGM, we also elected the office bearers and members of the Board who will serve for the next twelve months. Those elected are as follows: President Leighton Boyd Vice President Rick Clarke Treasurer Graham Owen Secretary Rosemary Boyd Board Member Chris Edwards Board Member Mary-Anne Carmody I would like to thank these people for volunteering their time for another twelve months. We currently have two vacancies on the Board and are seeking interested members who would be willing to assist us in the management of our organisation for the next twelve months. The Board currently meets approximately eight times per year. It would be good to share the workload by having a full complement of Board members. If you wish to find out more about what this role entails, please do not hesitate to phone me on 0417 566 899. If any member would like a copy of the 2011-2012 Annual Report, which was distributed at the AGM, please contact the office. IRDR & DNA Bank project I know that many of our members have signed up to participate in the Australian Inherited Retinal Disease Register and DNA Bank project. However, if you haven’t, it is not too late as Dr John De Roach and his team in Western Australia are currently looking for additional participants. If you are interested in personally contributing to this worthwhile research project, please phone the office on 03 9650 5088, so that we can discuss the matter with you, and send you the expression of interest form. NOVEMBER LUNCH A number of members met for lunch on Saturday 26 November at the Spaghetti Tree Restaurant in Bourke Street. Everyone present had a great time. The food and service was very good and we all had the opportunity to meet each other and to mingle over the meal. Some of our Telelink members attended and thoroughly enjoyed meeting each other in person, instead of over the telephone as they do regularly each fortnight. We would like to establish a number of different social occasions including lunches, morning or afternoon teas, picnics, dinners, or even day tours in the New Year. Please let us know if you have any suggestions. Of course the success of such occasions relies on the attendance of our members, their partners, other family members and friends. Please keep your eye out for notices of such activities so that you too can join in the social event. It would be great if we could all meet at some time in the future. OFFICE CLOSURE As is our usual practice, the office will be closed during the Christmas, New Year and January holiday period. This allows our office staff and volunteers to have a well earned break and enjoy time with their families. This year, our last day in the office will be Thursday 15 December 2011 and we will reopen again on Tuesday 31 January 2012. During this time, I can be contacted on my mobile phone and any mail, or messages left at the office will be attended to. RETINA AUSTRALIA NATIONAL CONGRESS 2012 Plans are well underway for the next national congress, which will be held in Sydney on Saturday 20 & Sunday 21 October 2012. Full details will be distributed as they become available, but I do know that one of the keynote speakers will be Professor Robin Ali who is based at Moorfields Eye Hospital in London. Robin’s work has been featured in previous Achiever articles as he has been involved in significant breakthroughs in retinal disease research. We are very pleased that he has agreed to travel to Australia specifically to address the Congress. Please put the dates in your diary and plan a trip to Sydney at this time. It will be well worthwhile. IN CONCLUSION Thank you all very much for your continued support and assistance. I hope that you all have a wonderful Christmas and a happy New Year and are able to take the time to celebrate this special time with family and friends. End of Article Beginning of Article The Australian Childhood Vision Impairment Register The Australian Childhood Vision Impairment Register is sponsored by the Royal Institute for Deaf and Blind Children and is supported by Vision Australia and Guide Dogs. The Register is the first of its kind in Australia. The data in the register is used to improve services for children and by researchers who work in eye disease and vision disorders. Families are warmly invited to register their children. Our age range is from 0-18 years, with eye conditions that have been diagnosed by an ophthalmologist, causing vision impairment in both eyes. Families can access our website to begin the registration process at: http://www.vifamilynetwork.org.au The criteria for being included on the Register are available on the website, and if families are unsure, they can contact staff on (02) 9872 0303, who will help out. The website also has a variety of low vision resources, upcoming events and for registered families, an online parent forum where they can meet, chat with and help support one another. If you have a child with vision impairment we hope that you will consider joining this important Register. Source: Sue Silveira, Research Fellow, Renwick Centre, Royal Institute for Deaf and Blind Children. End of Article Beginning of Article Campaign for a National Disability Insurance Scheme Vision loss is among the leading causes of disability in Australia, impacting well-being, daily functioning and independence. As a result, the Centre for Eye Research Australia (CERA) is seeking support for the campaign for a National Disability Insurance Scheme - a new system to offer better support for people with a disability, their families and carers. To ensure action, we need to show the government that there's widespread support for change. November 27 – December 3 marked a week of action across Australia to grow the movement for a new scheme to 100,000 supporters. To lend your support, join the campaign and encourage your friends to do the same. To support this campaign, visit everyaustraliancounts.com.au or contact CERA on 9929 8360. Source: CERA website. End of Article Beginning of Article More Information Made Accessible in Australia People who are blind or experience low vision have the right to request and receive information they require in a format of their choice. Under the Commonwealth Disability Discrimination Act, information providers are obliged to fulfil such requests unless this inflicts undue hardship, financial or otherwise on the provider. In the vast majority of cases this will not be so and people who are vision impaired can receive such accessible format materials as they require. This includes bills and statements and product information from utility companies, banks or insurance companies and superannuation providers, local Council newsletters and any government material. Don’t hesitate to call an information provider if you require accessible format material. Vision Australia’s Print Accessibility team works with government at all levels and other information providers to make information accessible. Vision Australia’s uniquely skilled production teams prepare these formats and their Online Accessibility team provide workshops and consultancy services in relation to the web environment. For further information or to obtain a list of currently available information in accessible formats, contact Tricia Cooney at Vision Australia by phone on 03 8378 1252 or by email: tricia.cooney@visionaustralia.org Source: Vision Australia. End of Article Beginning of Article Gymnastics for Blind or Vision Impaired Children You are invited to participate in an exciting new pilot program offered by Essendon Keilor Gymnastics, with support from Blind Sports Victoria.  This program will offer school age children (must be attending grade prep or higher) 10 weeks of Gymnastics and Trampoline Classes absolutely FREE.  These classes are suitable for absolute beginners, with no prior experience or exposure to Gymnastics.    Classes will be offered on Fridays at 4.30pm and on Saturdays at 12.00pm starting February 10th 2012. Some of the greatest benefits of gymnastics include coordination, power, strength, flexibility, balance, grace and most importantly injury preventing core stability and agility. Gymnastics teaches children perseverance, poise, confidence, attention to detail and concentration. Coaches from Essendon Keilor Gymnastics Academy will deliver the program, assisted by our Senior Gymnasts and Junior Coaches.  This will allow us to offer one-on-one assistance for the participants.  Funding from the Victorian Youth Foundation has made this possible.  Our Coaches have received training on "sighted guiding" to ensure they are ready to not only teach gymnastics, but to work with children who are blind or vision impaired. All Staff and volunteers have Working with Children's Checks.  Our Coaches are accredited through Gymnastics Australia and the Australian Sports Commission. Phone us on 9336 4077 or send through an email to ekga@gymnastics.org.au  to register your child to attend the program or for more information. How to get here:  194 Roberts Road, Airport West 3042 Public Transport Options: Number 476 and 465 buses leave Essendon Station and Moonee Ponds Junction. The bus stop is at the corner of Roberts Rd and Fullarton Rd, only 200 meters from our door.  Driving: We can easily be reached by the Calder or Tullamarine Freeways and the Western Ring Road or Via Fullarton Rd. Melways ref: 15 F8. Source: Essendon Keilor Gymnastics. End of Article Beginning of Article IAPO Calls for Urgent ActionUsing the Synthetic Progestin Norgestrel The following declaration is a strong document empowering all people with retinal degenerative diseases to fight for treatment and to ask that the necessary research is done by taking our perspective into account. K.P. Tsang from Hong Kong is representing Retina International within the IAPO (the International Alliance of Patients’ Organisations) and defending our cause!  The International Alliance of Patients' Organizations (IAPO) has called for urgent action in a statement on the prevention and control of non-communicable diseases (NCDs). The statement follows the adoption of a Political Declaration on the prevention and control of non-communicable diseases at a High-level Meeting of the United Nations General Assembly that concluded on 20 September 2011.     The IAPO congratulates delegates on the successful adoption of the Political Declaration and calls upon Member States and delegates to the UN High-level Meeting of the United Nations General Assembly, when implementing the commitments contained within the political declaration to:   1. Ensure the World Health Organisation Global Strategy for the Prevention and Management of NCDs addresses prevention, diagnosis, treatment, care and support of ALL chronic diseases. 2. Ensure effective implementation as measured by strengthened health systems (including service delivery, medical products, vaccines and technologies, health workforce, health systems financing, health information systems, and patient self-management). Ensure that the patient perspective is solicited and patients actively engaged in the design, leadership, implementation, monitoring and evaluation of effective and sustainable interventions to prevent and manage all NCDs. 1. Ensure that patient organisations are engaged as equal partners with other stakeholders in the development, implementation, and monitoring of legislation, health policies, regulatory frameworks, strategies, guidelines, and standards for NCD prevention and management. 2. Develop and implement, in collaboration with patients and community stakeholders, programs to improve health literacy among all populations, including the most disadvantaged. 3. Increase research on the prevalence and incidence of NCDs and their impact on the lives of patients, families and caregivers and the translation of knowledge into meaningful actions to improve the lives of patients and families. 4. Promote early diagnosis and treatment to reduce morbidity and mortality and improve quality of life. 5. Ensure all policies, programs, and strategies are based on the fundamental right to patient-centered healthcare based on unique needs, preferences and values, as well as patient autonomy and independence. About IAPO IAPO is the only global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare worldwide.  Members are patients’ organisations working at the local, national, regional and international levels to represent and support patients, their families and carers. IAPO has over 200 members which span over 50 countries and 50 disease areas and through its membership represents an estimated 365 million patients worldwide.  About Mr. K.P. Tsang Mr. K.P. Tsang, is affected by Retinitis Pigmentosa. In March 1995, Mr. Tsang co-founded Retina Hong Kong (formerly known as the Hong Kong Retinitis Pigmentosa Society), a patients self-help organisation, and has served as President since its inception. Mr. Tsang is also a board member of Retina International, an umbrella organisation of patients around the world. For many years, he has been devoted in providing information on retinal degenerations to Chinese-speaking communities, and has promoted multi-level communications channels between scientists, health care professionals, patients and their families in Hong Kong, China and the rest of the world. He has actively championed scientific research aiming at identifying the causes, as well as promoting prevention, treatment and cure of inherited retinal degenerative diseases. Source: Retina International End of Article Beginning of Article UN CRPD Media Release The UN CRPD (Convention on the Rights of Persons with Disabilities) recognises the importance of accessibility in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms. Transport and digital infrastructure are fundamental for freedom of movement of persons with disabilities; for the access to the internal market and for the mobility of persons and goods. Two proposals have been released: - A regulation establishing the Connecting Europe Facility has been proposed to improve interconnected transport, energy and digital networks. - In order to establish a single, network that integrates land, sea and air transport networks throughout the Union, the European Commission has established the trans-European transport network (TEN-T), which main objective is to allow goods and people to circulate between Member States and assuring international connections. For the disability movement, the accessibility of transport and digital networks is a key issue to allow 80 million European with disabilities to have the same opportunities to move, study, work, live and participate to the internal market as any other citizens in the EU. Source: UN CRPD, 21 October 2011. End of Article Beginning of Article What is Audio Description? Audio description (AD) is a process that allows the visual elements of a movie, DVD, TV show or performance to be described audibly during natural pauses in dialogue. Descriptions of visual elements can include scenery, settings, actions, facial expressions and costumes. Audio description can be either closed or open - Closed AD allows a person to listen in through headphones in a private manner while still allowing their sighted peers access to the same content without description, while Open AD allows the description to be heard by everyone. Blind Citizens Australia (BCA) has been lobbying for a technical trial of audio description on television on ABC1. In addition, BCA has been working very closely with the four major cinema chains (Greater Union, Hoyts, Village and Readings) to ensure that more cinemas with audio description continue to be rolled out across Australia. To find out where your nearest cinema with AD is located, visit www.yourlocalcinema.com.au Source: Blind Citizens Australia Parent News, November 2011. End of article Beginning of article Features: Beginning of Article THE HIDDEN FACE OF GRIEF AND LOSS My name is Carole Viney and I am a psychotherapist in private practice working with people who are experiencing relationship difficulties, anxiety, depression, grief and loss, or who may be seeking greater self-understanding. As a child I grew up with an awareness that my maternal grandmother suffered from progressive vision loss until finally becoming totally blind in later life. Yet it was not until I was diagnosed with R.P. (Retinitis Pigmentosa) in my early twenties that I began to understand the nature of this condition and the seemingly random way it landed on some family members and passed others by. Fortunately for me there has proven to be a strong streak of determination (some may say pig-headedness) which threads its way through our family, proving extremely useful to those of us who have been ‘chosen’! My aunt, Esther Philp, who is now in her nineties, and has only minimal light perception, still lives and manages on her own, while my daughter, Natasha, negotiates fearlessly for equal opportunity in her job as a customer service officer at the Mornington Peninsula shire. When reflecting on my own process of living with R. P. for forty years, I was struck (not for the first time) as to how rarely the words loss, grief and mourning were used in connection with the experience of losing one’s sight. Our society seems to have lost the capacity to engage with the complexity of painful emotional responses – sadness, grief, hopelessness, despair, frustration and anger – that may arise in response to the inevitable encounters with the consequences of our visual deterioration. I have often thought of this journey as a road or pathway which has some smaller potholes which we have to negotiate. That is, in a social context, is this person talking to me or someone else? Or are there seriously challenging mountains to climb? For me the loss of my capacity to drive was one such mountain and an even higher one was my losing the ability to read half way through a University degree. We are not encouraged to find or express our feelings of grief and I remember thinking at the time (long ago now) that I had no option but to ‘just get on with it.’ I now believe that in hiding the depth and profundity of our real emotions from our world we also hide these from ourselves leaving us with feelings of isolation and alienation: Is there anyone who really understands or cares how I feel? When we engage in the process of mourning, however, we give a conscious form to the reality of our losses as opposed to covering up; we begin the process of yielding to what is inevitable and understand change as part of our life. Recently I was persuaded by my daughter (against my natural inclination) to ‘drive a car’ at Sandown raceway and found myself profoundly moved by what seemed to be a shared experience of memories – both painful and joyous – of what had been lost and could now be re-visited and perhaps mourned for the first time. I believe that we are all unique in our subjective experiencing of loss, and perhaps my desire to give a greater focus to the space between this sense and the quickness of the move towards filling this gap with the wonders of technology etc., is specifically my own. But if my words do find a resonance with others then this knowledge may go some way towards healing the loneliness of our ongoing struggles and allow us to fully mourn what is no longer. Only then might we be able to turn our attention to confronting the challenges contained in feelings of dependence and independence and, of course, vulnerability. Mourning not completed or entered into, may lead to depressive or melancholic states, whereas if we are truly able to engage with painful feelings around self identity – what we once were we are no longer - we may discover (as has been my experience) that something new and surprisingly different begins to emerge which adds to my understanding of the complexity and value of who I am and how I interact with the world. Source: Carole Viney, BA, Grad Dip Counselling & Human Services, Masters Counselling & Human Services, Retina Australia (Vic) Inc member, psychotherapist in private practice. End of article Beginning of Article Robbing 'em Blind A legally blind, ex-Citigroup executive, has copped to embezzling more than $22 million from the New York banking giant and splurging on posh pads with gold-leaf ceilings and fancy cars he couldn't even see well enough to drive. Gary Foster, 35, pleaded guilty to bank fraud charges and faces up to 10 years in prison as part of a plea deal. Before leaving his post in Citigroup's treasury-finance offices in Queens, Foster earned $100,000 annually managing its internal investments. Foster's embezzlement scheme began in September 2003 and continued into 2011, feds said. Foster admitted he had wired the swiped money from internal Citi accounts into his personal bank account and wrote e-mails and sent faxes to order the transfers. Prosecutors say he covered up the scam by assigning phony contract or deal numbers to make the transfers appear bona fide. Source: M Maddux, New York Post, 7 September 2011. End of article RESEARCH UPDATE: Beginning of article Gene Therapy for LCA Caused by RPE65 Mutations Objective: To determine the safety and efficacy of subretinal gene therapy in the RPE65 form of Leber congenital amaurosis using recombinant adeno-associated virus 2 (rAAV2) carrying the RPE65 gene. Design: Open-label, dose-escalation phase I study of 15 patients (range, 11-30 years of age) evaluated after subretinal injection of the rAAV2- RPE65 vector into the worse-functioning eye. Five cohorts represented 4 dose levels and 2 different injection strategies. Main Outcome Measures: Primary outcomes were systemic and ocular safety. Secondary outcomes assayed visual function with dark-adapted full-field sensitivity testing and visual acuity with Early Treatment Diabetic Retinopathy Study charts. Further assays included immune responses to the vector, static visual fields, pupillometry, mobility performance, and optical coherence tomography. Results : No systemic toxicity was detected; ocular adverse events were related to surgery. Visual function improved in all patients to different degrees; improvements were localized to treated areas. Cone and rod sensitivities increased significantly in the study eyes but not in the control eyes. Minor acuity improvements were recorded in many study and control eyes. Major acuity improvements occurred in study eyes with the lowest entry acuities and parafoveal fixation loci treated with subretinal injections. Other patients with better foveal structure lost retinal thickness and acuity after subfoveal injections. Conclusions : Gene therapy for Leber congenital amaurosis caused by RPE65 mutations is sufficiently safe and substantially efficacious in the extrafoveal retina. There is no benefit and some risk in treating the fovea. No evidence of age-dependent effects was found. Our results point to specific treatment strategies for subsequent phases. Application to Clinical Practice : Gene therapy for inherited retinal disease has the potential to become a future part of clinical practice. Source : Archives of Ophthalmology, September 11, 2011. Study conducted by 24 participant researchers affiliated with various universities and research centres throughout the USA. End of article Beginning of Article Ireland’s Genable Technologies Complete €5M Series B Financing Genable Technolgies has announced that it has successfully completed a new financing round for €5m led by new investors Fountain Healthcare Partners alongside existing investors Delta Partners. This funding will support the on-going development of Genable’s suppression/replacement gene therapy technology and specifically progress Genable’s lead product GT038 for Retinitis Pigmentosa (RP) forward into clinical evaluation in man. Genable Technologies is a privately held, venture backed Dublin based bio-pharmaceutical company developing new gene medicines to treat “dominant” genetic diseases. Patients with rhodopsin-linked RP have a mutation in the rhodopsin gene, which causes a patient’s sight to worsen over time, eventually leading to blindness. GT038 is a pioneering and unique therapy to treat rhodopsin-linked RP that utilizes AAV (adeno-associated viruses) vectors to obtain expression of RNA (ribonucleic acid) interference molecules, which suppress the expression of the faulty gene, and replaces this with a gene encoding a functioning protein. This simple combination represents a new paradigm in medicine with the potential to cure this debilitating disease and not just treat the symptoms. Genable Technologies Ltd. was granted orphan drug designation for GTR038 by the European Medicines Agency in December 2010. Commenting on the new funding Dr. Ena Prosser, partner at Fountain Healthcare Partners said, “This renowned Trinity College-based team, along with the dedication and support of Irish families who carry genes which can lead to inheritable blindness, has pioneered research into this disease over several years. We believe that GT038 offers a significant technological breakthrough to address RP and we look forward to working closely with the Company to accelerate the development of GT038 and other products to the market.” Genable Chairman Dr. Geoffrey Vernon commented, “We would like to welcome Fountain Healthcare Partners as an investor with extensive industry expertise onto the Board. We would also like to take the opportunity to thank Delta Partners, Fighting Blindness Ireland, Foundation Fighting Blindness-National Neurovision Research Institute (USA) and Enterprise Ireland for the support they have provided Genable to date and their on-going commitment to the Company and its development of novel therapies for serious ophthalmic diseases.” Professor Jane Farrar of Trinity College Dublin and co-founder of Genable Technologies Ltd. concluded, “We are extremely pleased to see GT038 raise the necessary finance to translate basic research performed at Trinity College Dublin into the clinic. It will help raise awareness of RP as a serious disease and ultimately help more patients receive therapy for their disease.” Source: Retina International. End of article Beginning of Article The Role of the Vitreous in the Pathogenesis of AMD Age-related macular degeneration (AMD) is the main cause of severe visual decease in elderly people in the industrialised countries. AMD is a multifactorial disease with only limited therapeutic options before anti-VEGF (Vascular Endothelial Growth Factor) treatment was introduced. In spite of all the progress no long-term healing is possible. Actually, the vitreous is being investigated as a possible co-factor in the pathogenesis of AMD. Numerous authors demonstrated a higher incidence of vitreoretinal adhesion in exudative AMD by considering age, genetic and environmental factors. The essential question is whether the therapeutic release of vitreoretinal adhesion could affect the development and progress of AMD. Up to now only case reports and case series have demonstrated a positive effect on disease progress. An ongoing multicentre, prospective, comparative, randomised, double-blind clinical trial with enzymatic vitreolysis is now evaluating the effect of vitreoretinal release on the progress of AMD. The results are necessary to evaluate whether vitreoretinal release is a therapeutic option for the future. Source: Mennel S, Meyer CH, Schmidt JC., Klin Monbl Augenheilkd. 2011 May;228(5):460-4 (article in German). End of article Beginning of Article A Free Retinal Pigment Epithelium-Choroid Graft in Patients with Exudative AMD: Results up to 7 Years Purpose: To report and analyse long-term best-corrected visual acuity (BCVA) outcomes following a free autologous retinal pigment epithelium (RPE)-choroid graft translocation in patients with exudative age-related macular degeneration (AMD). Design: Prospective cohort study. Study Population: One hundred and thirty consecutive patients (133 eyes) with AMD underwent RPE-choroid graft translocation between October 2001 and February 2006. All patients had a subfoveal choroidal neovascular membrane with or without haemorrhage and/or an RPE tear. All were either ineligible for or nonresponsive to photodynamic therapy, the standard treatment at the time of surgery. Observation Procedures: Data collection included preoperative and postoperative visual acuity measurements, fundus photography, fluorescein and indocyanine green angiography, and icroperimetry. Main Outcome Measures: Postoperative BCVA. Results: The mean preoperative BCVA was 20/250. Four years after surgery, 15% of the eyes had a BCVA of >20/200, and 5% had a BCVA of ?20/40. One patient achieved a BCVA of 20/32, which was maintained at 7 years after surgery. Complications consisted of proliferative vitreoretinopathy (n = 13), recurrent neovascularization (n = 13), and hypotony (n = 2). Conclusions: RPE-choroid graft transplantation may maintain macular function for up to 7 years after surgery, with relatively low complication and recurrence rates. Retinal sensitivity, BCVA data, and fixation on the graft suggest that the graft, rather than simply the removal of submacular hemorrhage and/or choroidal neovascular membrane, was responsible for the preservation of macular function. This surgery may be an alternative for patients with AMD who cannot undergo other standard treatment. Source: Zeeburg EJ, Maaijwee KJ, Missotten TO, Heimann H, van Meurs JC., from the Rotterdam Ophthalmic Institute, Rotterdam, The Netherlands, American Journal of Ophthalmology, Sep 2011. End of article Beginning of Article The Role of Neuroprotectin D1 in Protecting Retinal Pigment Epithelial Cells During Oxidative Stress Retinal pigment epithelial (RPE) cells are the most restrictive layer of the three components of the outer Blood-Retina Barrier, preventing the passage of biomolecules in relation to size and charge and thus preserving a controlled environment for the photoreceptors. The retinal pigment epithelium is a tight structure that, when disrupted as a cause or consequence of pathological conditions, deeply affects the neural retina. Since adult human RPE cells are not replicative cells, their preservation is of major interest for the biomedical field due to their loss in many retino-degenerative pathologies. There are several triggers that elicit reactive oxygen species (ROS) formation in normal and pathological circumstances. When the production of these species overwhelms the scavenging and detoxifying systems, their activity results in programmed cell death. Docosahexaenoic acid (DHA) is an essential lipid that is conspicuously accumulated in photoreceptors and RPE cells in the retina. DHA and its oxygenation product, neuroprotectin D1 (NPD1), are major players in the protection of these cells and the retina. NPD1 promotes the synthesis of anti-apoptotic proteins of certain members of the Bcl-2 family and blocks the expression of pro-inflammatory proteins like cyclooxygenase-2. Source: Calandria JM, Bazan NG., Advances in Experimental Medicine and Biology, 2010;664:663-70, Department of Ophthalmology, Louisiana State University Health Sciences Centre. End of article Beginning of Article CLRN1 mutations cause nonsyndromic RP Objective: To describe the mutations in the CLRN1 gene in patients from 2 consanguineous Pakistani families diagnosed with autosomal recessive retinitis pigmentosa (arRP). Participants: Affected and unaffected individuals of 2 consanguineous Pakistani families and 90 unaffected controls from the same population. Informed consent was obtained from participants and the protocol was approved by a local institutional review board. Methods: Patients of 2 consanguineous families were genotyped with single-nucleotide polymorphism microarrays for genome-wide linkage analysis. The search for potential candidate genes within the 8-Mb overlapping homozygous region in these families revealed the presence of CLRN1, a gene previously known to cause Usher's syndrome type III (USH3), which was analyzed by direct sequence analysis. The clinical diagnosis was based on the presence of night blindness, fundoscopic findings, and electroretinography (ERG) results. Additionally, pure tone audiometry was performed to rule out Usher's syndrome. Main Outcome Measures: Fundoscopy, single-nucleotide polymorphism microarray, DNA sequence analysis, ERG, and audiometry. Results: Sequencing of CLRN1 revealed novel missense mutations (p.Pro31Leu and p.Leu154Trp) segregating in 2 families. Analysis of fundus photographs indicated attenuation of the retinal vessels, and bone spicule pigmentation in the periphery of the retina. The ERG responses were indicative of a rod-cone pattern of the disease. Audiometric assessment revealed no hearing impairment, thereby excluding Usher's syndrome. Subcellular localization studies demonstrated the retention of the mutant proteins in the endoplasmic reticulum, whereas the wild-type protein was mainly present at the cell membrane. Conclusions: The RP-associated mutations p.Pro31Leu and p.Leu154Trp may represent hypomorphic mutations, because the substituted amino acids located in the transmembrane domains remain polar, whereas more severe changes have been detected in patients with USH3. These data indicate that mutations in CLRN1 are associated not only with USH3, but also with nonsyndromic arRP. Source: Ophthalmology, 2011 Jul;118(7):1444-8. End of article Beginning of Article Robotic Seeing-Eye Dogs NSK, a Japanese robotics company, is hard at work on a robot seeing-eye dog that can roll across floors, climb stairs and assist the visually impaired. The robots have been in the making for several years, and the latest version is the third. The newest robot can move up to 10 times faster than the company’s previous ones. Its legs have been improved to help it avoid collisions and tripping over itself. According to NSK, the machines are technically called “quadruped walking robots,” because they use four legs to move. Robotics researchers have also given the latest guide dog the gift of sight by adding a Microsoft Kinect camera to its head. This can help it to navigate stairs and other obstacles. Kinect cameras are traditionally used for video games on the Microsoft Xbox 360 but are also often used in robotics projects. The company will exhibit the latest version of the robot this week at the 2011 International Robot Exhibition in Ariake, Japan. Source: N Bilton, New York Times, 8 November 2011. End of article Beginning of Article £26.5 Million Awarded for Research in UK The joint Biomedical Research Centre (BRC) for Ophthalmology, based at Moorfields Eye Hospital and the University College London (UCL) Institute of Ophthalmology, has been awarded £26.5 million over five years from the U.K. National Institute of Health Research (NIHR). "We are delighted to have been awarded NIHR biomedical research centre designation for the second time," says NIHR BRC director and ARVO President-elect Peng Tee Khaw, MD, PhD, FARVO (Fellow of the Association for Research in Vision and Ophthalmology). The allocation, a 40% increase in funding, was made following the results of a national competition. According to Khaw, the award was significantly higher than anticipated due to the quality of the application and what has been achieved in translational research at the BRC over the past four years. "We have been able to show that eye research can really change lives. We are thrilled with this extraordinary opportunity, particularly in these times of financial constraint," says Khaw. "This substantial investment will allow us to develop and deliver more life-changing treatments for people in the United Kingdom and around the world." Source: ARVO Insight. End of article Beginning of Article Product Pages TV Speak is an application that is installed on a computer which is equipped to receive the TV signal through a tuner card. This application allows the blind or visually impaired to use the most common functionality of digital television in an accessible way. All text content offered by digital television is verbalized by Acapela speech synthesis or any other SAPI voice installed in the PC, so TV Speak reads aloud texts such as the information from a program, the setup menus or the complete guide to the television programs. To control the TV remotely you have to use the computer keyboard on which you installed TV Speak and for more comfort you can do it with a wireless keyboard. Main Features With TV Speak the blind or visually impaired can access the most common functionality of digital television. Some of TV Speak's main features include: a. Common TV operations: channel up and down, change the volume, etc. b. Configure both television and TV Speak parameters. c. Access to teletext. d. Access to the Electronic Program Guide (EPG). e. Tune and manage television and radio channels. f. Record television programs (image + audio, or audio only). g. Parental control. For more information visit www.tvspeak.es End of article Beginning of Article TALKING FIRST AID KITS A company in the US has devised a Talking First Aid kit that provides technical guidance with audio directions that can pause or repeat throughout the treatment process. These first aid kits incorporate “talking” care packs for breathing/CPR, bleeding, shock, head and spine, bones, eyes, burns, bites and stings, and basics. The product manual also comes in “talking” form. The care packs are individually color-coded with the necessary supplies and step-by-step instructions. The concept behind this product is that first aid kits should be more than simply a container filled with various medical supplies. Rather, the kits should assist the user to recall essential information, act as a prompt or stimulus to overcome hesitation, and guide the user through those situations. For further information, contact Intelligent First Aid, 1750 Brielle Avenue, Unit B6, Ocean, NJ, USA. Ph: +1-908-7371270 Website: www.intelligent.firstaid.com. End of article Beginning of Article THUNDER DOG: The True Story of a Blind Man, His Guide Dog, and the Triumph of Trust at Ground Zero by Michael Hingson Michael Hingson was working in his office on the 78th floor of the World Trade Centre, Tower 1 on 9/11/01 when the terrorist attack happened. Roselle, the 3 year guide dog by his side didn’t need to know that a hijacked plane flew into the building. She just knew that her job was to keep her partner safe and out of harm’s way. The circumstances were extraordinary, but Roselle rose to the challenge and guided Michael down 1463 steps to safety. According to the author, “Thunder Dog is not a story about 9/11, but rather about trust and team work. Readers will be inspired by the bond that Roselle and I shared and how the human-animal bond is enriching and even saving lives.” Roselle passed away earlier this year after a long working life and retirement with Michael and his wife. Recently Michael established Roselle’s Dream Foundation which is intended to educate people about blindness and assist blind children and adults in obtaining some of the technologies needed to work in the world. Michael says: “The real handicap of blindness is not a lack of eyesight, but a lack of education about blindness. My dream is to raise funds to help offset the costs of wonderful technologies that can help the visually impaired. It is an honour to create this foundation in Roselle’s memory.” The book is available for purchase from www.amazon.com End of article Beginning of article Question Time with Ted Bidmade In this edition, Ted Bidmade has kindly agreed to volunteer for Question Time. 1. What’s your earliest memory? Catching chooks for Christmas dinner. Cutting their heads off and dressing them. 2. What’s your idea of a good time? Mixing with people. 3. What’s your ideal holiday destination? Queensland 4. Who inspires you? Family. 5. What makes you angry? Blindness. Not being able to do things that I used to do. 6. What’s the hardest thing you’ve ever done? Watching two adult children dying – John and Leanne. 7. What’s the best thing you’ve ever done? Driving around Australia in 1988 for 6 months. Great! 8. What do you like about Retina Australia (Vic)? Keeping up with information on RP and the telelink. 9. If you could change one thing about the world, what would it be? Keep the peace and feed the poor. 10. What’s the most important thing you’ve learnt about life? Do not take things for granted and nothing is granted. Please consider volunteering for Question Time in future editions, or consider contributing to your Newsletter in some other way, as Carole Viney has done for this edition. Thanks very much – Ed. End of article Beginning of Article Last Word “If we all did the things we are capable of doing, we would literally astound ourselves.” “Discontent is the first necessity of progress.” “Genius is one percent inspiration and ninety-nine percent perspiration.” “I never did a day's work in my life. It was all fun.” THOMAS A EDISON, 1847 - 1931 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 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.