THE ACHIEVER Retina Australia Victoria AUTUMN EDITION – MARCH 2010 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 INSIDE FROM THE PRESIDENT RETINA AUSTRALIA FUNDS TWO RESEARCH PROJECTS IN 2010 RETINA FRANCE CELEBRATES 15 YEARS BY FUNDRAISING AMD AWARENESS IS GROWING IN AUSTRALIA FEATURE: BLIND AUSTRALIAN MUSICIAN SPEAKS TO STUDENTS RESEARCH UPDATE: BIONIC EYE IN SIGHT STEM CELLS RESTORE SIGHT IN MOUSE MODEL OF RP RARE DISEASES CONFERENCE QUESTION TIME ENTERTAINMENT BOOKS INHERITED RETINAL DISEASE WEBSITE ANNIVERSARY RAFFLE WINNERS LAST WORD AMAZING AUTUMN NEWS * Save heaps and support Retina Aus (Vic) at the same time by purchasing an Entertainment Book * Bionic Eye to be developed in Melbourne * Research projects funded by Retina Australia * Inspirational Australian musician speaks to school groups Beginning of article FROM THE PRESIDENT – Leighton Boyd I would like to formally welcome Mr Chris Edwards to the Board of Retina Australia (Vic) Inc. Chris has had a long association with our organisation, including being a member of our inaugural young people’s group and subsequently an editor of our Achiever newsletter with his wife Joan. Chris currently holds a senior position with Vision Australia and is a most welcome addition to our Board which now has reached its full complement. All Board members are volunteers and give freely of their time to support the work of our organisation, but we rely on you, our members, to contribute through suggestions and ideas as to how we can improve our services and how we can raise money to support research projects. If you have any suggestions, do not hesitate to phone the office on 03 9650 5088, or email on support@retinavic.org.au . Later this year, on the weekend of October 9th and 10th, Retina Vic will be hosting the annual meeting of Retina Australia along with our own Annual General Meeting. Please note Saturday 9th October in you diaries as we are planning a forum on research and hope to have the Retina Australia funded researchers presenting their latest research results along with the most up to date world research information relating to retinal diseases. Actual details of the AGM and forum will be circulated closer to October, but this will be one event not worth missing. The 16th Retina International World Congress will take place on 26th and 27th June in Stresa, Italy. The theme of the Congress, hosted by Retina Italy, is “Change Our Vision – Bridging the Gap from the Lab to the Patients”. The Congress will comprise reports and discussions by and with the world leading researchers and clinicians dealing with some of the following topics: * Clinical diagnostic tools * Retinal degeneration: lessons from basic research * Genes and Gene Therapy * Stem cells and cell therapy * Classification and epidemiology of an Orphan Disease * Neuroprotection * Molecular diagnostic tools * Age related macular degeneration: recent advances * Low vision aids and rehabilitation * Ongoing clinical trials I will be attending the Congress, as well as the associated General Assembly and Continuous Education sessions in the days prior to the Congress, as a representative of Retina Australia, with our national president Graeme Banks and my wife Rosemary. I am looking forward to hearing firsthand the latest research results as well as to meeting delegates of Retina organisations from many countries across the world. Further information about this event is available at www.retinaitalia.org/16th-retina-international-world-congress-en.html. If you are interested in attending, simply follow the prompts online to register. A personal Congress report will be published in the Spring Achiever and a full report will be available on the Retina International website, www.retina-international.org soon after the completion of the Congress. End of article Beginning of article Retina Australia Funds Two Research Projects in 2010 Once again, due to the generosity of our supporters, Retina Australia has been able to grant funding to two research projects this year, both being undertaken at the University of Melbourne. Firstly, Professor Ursula Greferath and her team have been awarded $40,000 for their project to find a treatment for degeneration of the retina. "Histamine is known to cause an immune response in our body, often leading to allergies. Recently histamine was found to act as a messenger in the brain, carrying information from nerve to nerve. We now have evidences of histamine directing the proper development of the light sensors in our eye, the photoreceptors. The aim is to find out exactly what role histamine has in the regulation of photoreceptor development/maintenance to be able to use that knowledge to develop new ways to treat retinal disease." The second grant of $23,600 was awarded to Dr Erica Fletcher and her team whose research is also in search of a treatment. "Understanding how photoreceptors die is crucial for the development of therapeutic agents that slow the progression of RP. The research is aimed at examining in detail how the molecule, ATP, causes photoreceptor death, and whether blockade of this class of molecule slows photoreceptor death." This funding is the result of a significant fund-raising effort by RA supporters, especially in view of the economic downturn experienced by the community in 2009. It is also over and above the ongoing cost of our national Inherited Disease Register and Data Bank for families in Australia affected by Retinitis Pigmentosa and other Retinal Dystrophies. End of article Beginning of article Feel like a regular chit-chat over the phone with other members? Do you have a child with a retinal disease? OR Are you affected by a retinal disease and living alone? Contact the office to join one of our Telelinks. Ph: 03 9650 5088 End of article Beginning of article Retina France's "A Thousand Choirs for One Vision" to Celebrate 15 Years For the past fourteen years, Retina France has championed a unique concept in France:  "Mille Choeurs pour un Regard" or "1000 Choirs for One Vision." Last year more than 2000 choirs participated in 700 concerts to raise awareness and funds for Retina France. The concerts raised more than 430,000 Euros and will fund research programs for retinal diseases.   This year, Retina France has the support of Gilbert Montagné the legendary French musician and singer who has been blind from birth. He is best remembered for his international hit "The Fool", which was a number one single across Europe in 1971. Gilbert Montagné composed an original song for this year's events and each choral group is encouraged to perform the song during their program.  Source: AMD Alliance International. E-newsletter, Dec 09 End of article Beginning of article AMD Awareness is Growing in Australia Proof that awareness campaigns do pay off!  The Macular Degeneration Foundation (MDF) in Australia has reported on national research indicating a massive increase in the Australian public's awareness of macular degeneration. In February 2007 only 47% of Australians were aware of macular degeneration and only 58% of people in the at-risk group for AMD were aware of this disease. Furthermore, only 32% knew this disease affected the eyes and only 1 in 3 over the age of 50 had claimed to have had their macula checked. The research showed that most Australians simply did not know where the macula was, let alone that AMD affects the eyes. However, national research conducted in 2009 shows that the overall population awareness of macular degeneration has increased by 53% (from 47% to 72%). Population awareness for people over 50 increased by 48% (from 58% to 86%). Awareness that macular degeneration affects the eyes increased by 90% (from 32% to 81%).  In addition, the research further indicated that those over age 50 who had their macula checked in the last 2 years increased by 75% (from 33% to 58%). The Macular Degeneration Foundation reported that optometrists across the nation are reporting that the Foundation's TV, radio and print awareness campaign is driving those at-risk of AMD, not only to have their eyes tested, but also to ask about their macula. Source: AMD Alliance International, E-Newsletter, Dec 09 End of article Beginning of article Feature Blind Australian Musician Speaks To Students About Never Giving Up When Lorin Nicholson was learning to play the guitar, he couldn't see his teacher's fingers, the strings or read the music on a page. He learned by hearing and feeling. Legally blind with RP, the Australian musician and motivational speaker now travels internationally playing the guitar and speaking to students about not giving up on dreams and not bullying others. He's been playing for 25 years. He performs a wide range of songs on the guitar - from Beethoven to Metallica. During a recent visit to an All Saints Episcopal School in the US, he told the students that the hardest thing about going through school was being teased by other kids. “They would push me around and hide things from me. I hope nobody here gets teased like I was. It's terrible." He encouraged students to include others and treat others exactly the way they want to be treated. Nicholson said that even as an adult when he walks down the street with his cane, he can hear people coming, "and they always stop talking," he said. "You don't have to say anything to alienate people - just walk by and say nothing at all," he said, adding someone could easily turn that around by going up and saying, "Good day, mate." Nicholson has visited about 1,000 schools in Australia, New Zealand and the US delivering his message and playing the guitar. Besides the anti-bullying message, Nicholson encourages students to persevere, telling a story about riding his bicycle 245 kilometres from Tamworth to Port Macquarie as a blind youngster through the mountains, raising over $7000 for charity in the process. His friends thought it would be impossible. But with his father driving in the car and he on his bike, he eventually accomplished his goal, he said, calling it an "unbelievable feeling." His family, friends and school were amazed and proud. But he said he never did it to impress others. "I didn't just climb the Great Dividing Range in Australia, I climbed an ever bigger mountain inside myself," he said. "Because I realised for the first time that it didn't really matter whether I was blind. You can achieve anything if you never give up." He said only one person stops you from achieving - you. "You might not be blind or deaf or in a wheelchair, but we all have challenges," he said. "Life's not always easy and it doesn't always seem fair either, but that's not the thing we focus on. We not only have weaknesses, but we all have God-given strengths and talents too. Don't let anyone discourage you." Nicholson also shared with students about what it's like to be blind, including how he tells time with a special watch, how he pours milk into his cereal bowl, and how he would love to see his wife and kids smile. "I hope you guys never take that for granted," he said. During his presentation, Nicholson, along with his father, John, also showed students what it's like to have his 6 percent vision. Two students were asked on stage to wear a pair of glasses designed to replicate that percent of vision. Basic tasks such as shaking hands, seeing people in the audience, walking as well as finding and dialling mobile phone numbers proved difficult. One of the students asked what the hardest thing is he has to deal with on a daily basis. Being independent, he said. "If I come to a strange place like your school, I have no idea where anything is really. So, for me, I can't just go walking off by myself," he said. "That is the frustrating part of daily life." Another student asked if he is famous. Nicholson said that in Australia he is pretty famous, appearing on several nationally televised programs, including Vision Australia’s Carols by Candlelight in 2006 and 2008 at Melbourne’s Sidney Myer Music Bowl. However, he joked, "Oprah doesn't know me yet. She will, though." Nicholson has recorded several albums and was named an "Australian of the Year" nominee this year, according to his biography. Nicholson said that he got started doing these performances after his father-in-law, who is a teacher, asked him to speak to one of his classes and it was clear students benefited from hearing his story. He's been performing for about six years now. His main message: "We all face adversity in life, but miracles happen because of the hardships in life. Believe in yourself and help other people to believe in themselves. Strive to achieve your own personal potential." Source: Megan Middleton, www.tylerpaper.com, 4 November 2009 For more information about Nicholson, visit www.blindguitarist.com End of article Beginning of article Research Update Bionic Eye In Sight Leading Australian researchers have welcomed an announcement by the Australian Government of $42 million in funding for the development of a bionic eye capable of restoring vision to the blind. Bionic Vision Australia is a consortium including the University of Melbourne, the University of New South Wales, the Bionic Ear Institute, the Centre for Eye Research Australia and NICTA (National Information and Communications Technology Australia). The project is also supported by researchers from the Australian National University and the University of Western Sydney. Bionic Vision Australia Chairman, Professor Emeritus David Penington AC says the consortium is honoured to have been selected by the Australian Research Council for this funding. “This opportunity will allow our team to use its outstanding know-how and expertise to develop a functioning retinal implant that will deliver profound benefits to sufferers of degenerative vision loss such as retinitis pigmentosa and age-related macular degeneration,” he says. Research Director of Bionic Vision Australia and Professor of Engineering at the University of Melbourne, Professor Anthony Burkitt, says the research program to develop a retinal implant is ambitious but that the expertise in the team makes it achievable. The new device will use a video camera - fixed to a patient’s glasses - to capture images which are then translated into electrical impulses that stimulate electrodes inserted into the retina. The resulting electrical impulses stimulate the same area of the retina usually activated by visual cues, and over time the patient learns to interpret these nerve signals as useful vision. Professor Nigel Lovell from UNSW’s Graduate School of Biomedical Engineering says this funding means life-changing bionic vision is now a step closer. Head of the Macular Research Unit at the Centre for Eye Research Australia (CERA), and Professor of Ophthalmology at the University of Melbourne, Dr Robyn Guymer says the new device will provide a greater benefit for patients than existing bionic eyes. “This advanced bionic eye will not only provide users with increased mobility and independence, but hopefully also enable them to recognize faces and read large print,” she says. Professor Rob Shepherd, the Director of the Bionic Ear Institute, says that Australia has been a world leader in medical bionics with the development of the bionic ear.  “The funding announced by Senator Carr promises to continue our nation’s leadership in innovation, discovery and commercialization in medical bionics”, he says. Chief Executive Officer of Australia’s Information and Communications Technology Research Centre of Excellence (NICTA) Dr David Skellern, says he is thrilled that NICTA will be applying its advanced microelectronics and visual signal processing expertise to the bionic eye device development program. NICTA will collaborate with other Bionic Vision Australia members to develop the implant’s hardware, communications and visual processing system. The first human implant is likely to occur in 2013 and take place at the Royal Victorian Eye and Ear Hospital in Melbourne. Meanwhile, Mr Peter Lane from Manchester in Britian, who is one of 32 people taking part in a worldwide trial of a form of a bionic eye developed by the American company Second Sight, has had his vision partially restored. Mr Lane who has RP, lost much of his sight during his 20’s. The technology has allowed Mr Lane to see the outline of objects, such as doorways and furniture, and to read letters through a series of dots of lights for the first time in almost 30 years. “I'm just reading small words at the moment, but it's a start. The doctors have said they'll get me a screen so I can read at home and I'm hoping I'll be able to read letters I get in the post by myself eventually. I get around inside my flat okay without the glasses because I know where everything is, but outside they give me more confidence and a bit more independence. The images I see move and that takes a bit of getting used to, but I can see cars - they look like cotton wool. It's exciting to be part of the trial.” Mr Lane was one of three patients to undergo a four-hour operation to implant the receiver into his eye at Manchester Royal Eye Hospital last year. He had to wait a further two months for his eye to heal before trying out the device. Sources: Bionic Vision Australia, Tuesday 15 December 2009. Liz Hull, The Daily Mail, UK, 13 January 2010 End of article Beginning of article Stem Cells Restore Sight in Mouse Model of RP An international research team led by Columbia University Medical Centre successfully used mouse embryonic stem cells to replace diseased retinal cells and restore sight in a mouse model of retinitis pigmentosa. "This research is promising because we successfully turned stem cells into retinal cells, and these retinal cells restored vision in a mouse model of retinitis pigmentosa," said Stephen Tsang, M.D., Ph.D., assistant professor of ophthalmology, pathology and cell biology, Columbia University Medical Center, and lead author of the paper. "The transplanted cells not only looked like retinal cells, but they functioned like them, too." In Dr. Tsang's study, sight was restored in one-fourth of the mice that received the stem cells. However, complications of benign tumours and retinal detachments were seen in some of the mice, so Dr. Tsang and colleagues will optimise techniques to decrease the incidence of these complications in human embryonic stem cells before testing in human patients can begin. "Once the complication issues are addressed, we believe this technique could become a new therapeutic approach for not only retinitis pigmentosa, but age-related macular degeneration, Stargardt disease, and other forms of retinal disease that also feature loss of retinal cells," said Dr. Tsang. Similar approaches to macular degeneration have demonstrated efficacy in other rodent models, but since these models are of rare, unique pathophysiologies of retinal degeneration, they may not be generalisable to most human forms of retinal degeneration, e.g., age-related macular degeneration, retinitis pigmentosa or Stargardt disease. "It's a good thing that more models are being tried, as this shows there may be real potential for stem cells to treat different causes of the loss of retinal pigment epithelium in humans," said Dr. Tsang. Source: Science Daily, February 24, 2010 End of article Beginning of article Rare Diseases Conference The European Science Foundation (ESF) in association with EuroVisionNet and Foundation Voir et Entendre organized a Conference in Biomedicine entitled Rare Diseases II: Hearing and Sight Loss. The Conference was held on 22-27 November 2009 in Sant Feliu de Guixols (Costa Brava), Spain. It was chaired by Prof. Christine Petit (Institut Pasteur, Inserm, Paris, France) and Prof. José-Alain Sahel (Institut de la Vision, Paris, France). The Conference focused on current advances in the research on the relationship between auditory and visual sensory systems. Special attention was paid to the significant progress in understanding the pathogenesis of the hearing and sight loss, and the recent advances in the development of therapeutic approaches. The scientific program was conceived to present and discuss biochemical, genetic and physiological parallels between the two sensory systems, hearing and vision, as well as the common pathophysiological pathways. Cellular and molecular mechanisms underlying retina (the light-sensitive tissue of the eye) and cochlea (the auditory sensory organ) development and functions were a main focus of the talks and the discussions. Development of the sensory organs and evolution of the two sensory systems were reviewed also in the perspective of understanding how the sensory information from the two systems is integrated and of identifying the potential targets for pathological disruption. Rare diseases characterized by hearing and sight loss (ciliopathies, retinopathies, Usher syndrome) were in the focus of the conference. Genotype/phenotype correlations were revealed. New horizons in understanding the pathophysiological mechanisms in order to find therapeutic targets were communicated. Mechanisms of crucial importance, such as oxidative stress, were emphasized as possible targets for future therapies. Discussions on the continuum between fundamental science and applied medicine took the attention of the audience. Animal models of rare diseases were presented in the prospect of translation of basic science advances to tangible benefits in the clinical practice. Time was devoted to a deep reflection on therapies under development such as prosthesis, gene therapy, and new pharmacological and stem cell options. Keynotes lectures were held by 45 invited speakers, who are opinion leaders in the field of rare diseases affecting the vision and hearing. The scientific program also included eight selected short talks and 51 posters covering both fundamental and clinical science. Three prizes for best poster presentations were awarded after a challenging competition. The Conference afforded an excellent opportunity to exchange ideas and opinions, communicate scientific information, and initiate new collaborations in a warm and friendly atmosphere. It also offered the occasion to listen to patients expectations. Source: Retina International End of article Beginning of article Question Time with May Houlihan In this edition, May Houlihan has kindly agreed to volunteer for Question Time. Please contact Rick through the office to volunteer your answers for future editions. 1. What’s your earliest memory? Running from a wave in the ocean at Portland and it went right over my head. I was 3 and a half years old. 2. What’s your idea of a good time? Going on holiday or friends visiting when passing through. 3. What’s your ideal holiday destination? Italy. I have a sister who lives in Tuscany and I love the lifestyle, work, food and fun. 4. Who inspires you? Nelson Mandela. 5. What makes you angry? Disrespect and dishonesty. 6. What’s the hardest thing you’ve ever done? Watch my beautiful die with cancer. 7. What’s the best thing you’ve ever done? Nurse him at home. 8. What do you like about Retina Australia (Vic)? I appreciate the help given to me when my son needed appointments in Melbourne and The Achiever is always interesting. 9. If you could change one thing about the world, what would it be? Cut out the greed and crime. 10. What’s the most important thing you’ve learnt about life? Use every day to the best of your ability. Love your family and help your fellow man. We only reap what we sow. End of article Beginning of article The 2010 | 2011 Entertainment™ Books will be available from early April – order now. The Entertainment™ Book is a local restaurant and activity guide providing hundreds of 25% to 50% off and 2-for-1 offers from the finest restaurants, cafés, attractions, activities and accommodation. Still selling for only $65, the Books are filled with offers worth well over $15,000. The 2010 | 2011 edition features great new inclusions such as: Sarti, Comme Kitchen, Embrasse, Vin Cellar, St Judes Cellar, Public House, Les Boucheries Parisiennes, Michel’s Patisserie, Laurent, Reading Cinemas And of course, there are plenty of your favourites, including: Jacques Reymond, Taxi, Ezard, Nobu, Syracuse, Red Spice Road, Bottega, The Point, TGI Fridays, The Pancake Parlour, Crust Gourmet Pizza Bars, Nandos, Hoyts, Village Cinemas, Zoos Victoria To ensure that you receive your new 2010 - 2011 Entertainment™ Book as soon as possible, send in your form, phone or email me immediately to order your copy of the Book. As a special offer, order and pay for your new Book before 7th April and you will receive a bonus offers certificate valued at over $150 (subject to availability). Featuring offers from six of the new 2010 | 2011 inclusions, these bonus offers can be used straight away RETINA AUSTRALIA VIC (INC) Name: Lin Sun Email: support@retinavic.org.au Phone: (03) 9650 5088 End of article Beginning of article Inherited Retinal Disease Website Information from Leighton Boyd Many of you have contributed to the Inherited Retinal Disease Register and DNA Bank project by sending your blood or saliva sample, or are in the process of doing so. The aim of the project is to establish a comprehensive Australian IRD Register and DNA Bank and to progressively analyse stored DNA samples in an attempt to identify IRD-causing mutations. Currently the research team in WA have been inundated with expressions of interest, so if you have not been contacted yet, rest assured you will be. The website containing a summary list of results to date can be found at: http://www.scgh.health.wa.gov.au/Research/InheritedRetinal.html. This site contains a document indicating the number of DNA samples stored, their origin, and any genes containing disease causing mutations that have been identified so far. This website is updated every three months and currently lists 1300 DNA samples which have been collected from individual or family members of Retina groups across Australia. Take a look, it is interesting data, even though it is incomplete. If you have not registered your interest in personally participating in this Retina Australia funded project, please do not hesitate to phone the office, and Lin will send you the forms for you to complete and forward directly to the researchers. End of article Beginning of article Retina Vic’s 30th Anniversary Raffle Winners Congratulations to all the prize winners of our 30th Anniversary raffle. This year all winners as listed below were either members, or closely related to members. A big thank you to everyone who sold tickets and helped raise $2,965 for research. Prize Hotel Windsor Prize - Martin Israel of St Kilda East Crown Dinner - Gladys Rafferty of Altona Set Top Box - Maureen Fleming of Coburg Simon Johnson - Darren Newnham of Romsey Bokchoy Tang - Jennie Fraser of Heathcote Wine cooler etc - Gladys Anderson of Dandenong Wine - Jenny Bittlemann of Inverloch Picture Frame - Mauriel Head of Geelong Candle holder etc - Mardi Ball of Patterson Lakes End of Article Beginning of Article LAST WORD Adversity has the effect of eliciting talents which in prosperous circumstances would have lain dormant. HORACE, ANCIENT ROMAN POET, 65BC–8BC 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