Top of front page R E T I N A A U S T R A L I A V I C SPRING EDITION SEPTEMBER 2008 THE ACHIEVER Retina Australia Victoria Registration # A0002991W 247 -251 FLINDERS LANE ROSS HOUSE, 4TH FLOOR 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 International Press Release Congress Papers Snowy Owl Annual General Meeting Latest news from Cars of the World Camera for the Blind Question time Research Latest Early Bird For your information Beginning of article SPRING NEWS World Retina Day Press Release Snowy Owl Arrival Annual Meeting 11/10/2008 Camera an eye for the Blind Latest Research A reminder that subscriptions are now due, If you have misplaced your renewal form, please contact Mary in the office for a replacement, or simply pay your subscription over the phone. End of article Beginning of article From the President Over the past 12 months, particularly in the nine leading up to this issue of The Achiever, Retina Australia Victoria has been focusing on developing and improving within the office. This is a line myself and predecessors have alluded to in the past, but it is now more evident than ever as signs of investment from the generosity of the Victorian Ladies Bowling Association donation filters through. Of note is the hard work of our office staff including Mary Maga – who has settled in well with her administration role, and indeed the tireless work put into our new “all gizmo” database program by Judi Potts. Their support and hard work is to be recognised by members and supporters, particularly for Judi who travels from Morwell each time she works at the office. A commendable effort. Our Annual General Meeting is fast approaching, and all who intend to attend are in for a treat with our Special Guest Speaker for 2008 being Dr Erica Fletcher. Dr Fletcher is a Senior Lecturer and Principal Investigator from the Visual Neuroscience Laboratory at the Department of Anatomy and Cell Biology, University of Melbourne. Dr Fletcher will bring us up-to-date with the latest in local and world research and treatments. This issue of The Achiever also provides a snapshot of the recent Retina International Congress held in Finland, at which Retina Australia was represented by its President, Graeme Banks OAM. Yours in sight, Charles Rogers President End of article Beginning of article Thankyou … To the hardworking Board members who give so freely of their time to assist me in all of the work associated with running such an organization as ours. Some of our Board Members will be retiring at the forthcoming AGM, so an extra special thank you to them for their input during their term of office. Vice-President – Jane Evans Secretary – Rosemary Boyd Treasurer – Graham Owen Board Members -Fiona McNabb Leighton Boyd Rick Clarke Vision 2020 Australia Representative -David Foran Administration Officer – Mary Maga End of article Beginning of article Press Release from Retina Internationanational TREATMENTS FOR BLINDNESS-OUR SHARED RESPONSIBILITIES World Retina Day took place on Saturday September the 27th 2008. This year’s event concentrated on sharing the load of responsibility along the trek towards treating Inherited Retinal Diseases such as Retinitis Pigmentosa (RP). The event is a worldwide undertaking of Retina International, an umbrella group of patient-led organisations concerned with Inherited Retinal Degenerations from all over the world. Retinal degenerative conditions affect people of all ages from infancy through to adulthood and generally cause the retina to degenerate over a period of time (specific to each individual) and the more time goes by without treatment the more sight is irreversibly lost. However, hope is now very definitely in sight. As we transition into the bright new world of clinical trials for Retinal degenerations, a united global community of biomedical researchers, clinicians, pharmaceutical companies and patient organisations, must all be prepared to share responsibility and this sharing of responsibility must involve engaging in mutually supportive relationships. A culture of shared responsibility will be vital if we are to capitalise on the recent significant advances made towards a cure or therapy for retinal degenerative conditions. One of these shared responsibilities is patient registries. Without these registries potential treatments and cures can not be further developed. While countries government must resource and endorse the process of proper genetic diagnosis and genotyping through to establishment of registries, the local community of biomedical researchers, clinicians, pharmaceutical companies and patient organisations must share the responsibility too. On World Retina Day 2008, Retina International called on all those committed to treating retinal blindness to work together and embrace our fundamental humanitarian motive-fighting against the prospect that millions of people around the world may never see because they don’t have access to treatments. Clinical trials investigating the potential of Encapsulated Cell Technology (ECT-CNTF) are being conducted by Dr. Weng Tao and her team at Nurotech, Long Island in the United States. This trial is showing huge promise as a potential treatment for RP. Groups in Germany and the United States working on clinical trials that hope to restore sight to the blind through the use of a retinal microchip implant. Also, at University College London Prof. Robin Ali and his team as well as Prof. Jean Benet from the Children’s Hospital of Philadelphia (CHOP) have published the first highly encouraging results of a clinical trial looking at a potential gene therapy for a specific form of RP (RP65). These results were confirmed by the recent publication of Prof. S.Jacobson and his group at the Universities of Pennsylvania and Florida. It has taken the international retinal research community more then thirty years to reach this exciting point. With so many clinical trials on-going and more approaching this vital stage in their development, patients now have a real hope of a brighter future. A number of factors are crucial to the translation of these research projects to realistic therapies and Retina International called on biomedical researchers, clinicians, pharmaceutical companies and patient organisations to keep our common humanitarian motive in mind on September 27th 2008. Christina Fasser, President Retina International www.retina-international.org End of article Beginning of article SUMMARY REPORT ON RETINA INTERNATIONAL CONTINUOUS EDUCATION PROGRAM CONGRESS PAPERS HELSINKI, FINLAND, 29 JUNE TO 3 JULY, 2008. Prepared by Graeme Banks, President of Retina Australia The Congress received many papers (including some presented in Finnish and simultaneously translated) on gene therapy trials, pharmaceutical trials, nutritional therapies, stem cell research and retina prosthetic devices – including key-note addresses by Prof Alan Bird, Dr Jerry Chader and Prof Robin Ali. Particular points, as follows, were noted. Gene therapies will be of greater assistance to younger patients as against those patients who have had significant deterioration over many years including those with more functional photoreceptors remaining. With implants it has been found that the brain has been able to fill in a lot of the missing information particularly outside of the areas covered by the implants. It is now firmly recognised that the immune system has a vital role in development of AMD in an individual. There has to be an ‘inflammatory’ signal. EHA fatty acid is highly represented in photoreceptor cells in AMD patients. An AMD mouse model has been developed and the mice will assist in the same way as used with early gene therapy trials. Ushers Type III will be a good candidate for gene therapy work. Half of the known cases are in Finland. Gene trials using monkeys are to commence shortly. There are some 10/12 other specific inherited retinal disease genes on the short list for consideration including RPGR, RP2, McrTR, PRPF31, CEP290, ABCA4, NR2EC, CNGB3, GNAT2, CNGA3. Comparison trials are to be undertaken in the USA to compare results from AVASTIN and LUCENTIS for use in wet MD. CNTF has proven to be very useful for treatment of RP and dry MD. Earliest commercial availability would be 2010. End of article Beginning of article Announcing the arrival of Snowy Owl Snowy Owls are almost pure white with feathers on both legs and feet and they have yellow eyes. During summer they can develop dark spots. They are found on the tundra in northernmost Canada and Alaska. They live in the Arctic unless food sources are scarce. Snowy Owls have incredible vision. They can see from high up in the sky and swoop down silently to catch their prey. They catch and eat birds, fish and other small animals and nest in shallow holes in the ground. This owl was chosen to be our “Owl for the year” because it moves feely at night, an opportunity denied many young people with Retinitis Pigmentosa causing night blindness and tunnel vision. Older people with Macular Degeneration miss reading and seeing friend’s faces, which this Owl can clearly do. Every $2 from the sale of these owls supports thousands of Australians who lose a little more sight each day but who hope for a treatment soon. Please contact Mary in the office if you would like to purchase a Snowy Owl. Mary can also send you out a suitably sized pack of Owls, if you are interested in selling to family and friends. Every $2 helps our fundraising for Research. We also have little display boxes for shop counters etc if you are interested. Do not hesitate to phone, 9650 5088, Mary will be only to happy to help. Entertainment Books We are pleased to say that our allocation is now nearly sold out. If you still wish to purchase one for yourself or as a present for someone, contact Mary in the office. The book contains lots of value and is only $65. For every book we sell, $13 is donated by the Entertainment Book company for our use. As with the Owl sales, all proceeds are directed towards Research. Every sale, no matter how small, helps. End of article Beginning of article Reminder…. ANNUAL GENERAL MEETING This meeting will be held on Saturday afternoon, 11 October 2008 commencing at 1:30pm in the Hayden Raysmit h Meeting Room , 4th Floor Ross House 247 -251 Flinders Lane, Melbourne. Our Guest Speaker for the afternoon will be Dr Erica Fletcher, Senior Lecturer and Principal Investigator from the Visual Neuroscience Laboratory, Department of Anatomy and Cell Biology, University of Melbourne. Dr Fletcher will be speaking about her research which is partly funded by Retina Australia, as well as giving us news of current research programs across the globe including the Bionic Eye and the clinical trials which are being conducted at Moorefield’s Eye Hospital in London and the Philadelphia University. This is an excellent opportunity for our members to hear about the very latest progress in eye research and learn first hand what developments may be around the corner. There will also be opportunities to ask questions of Dr Fletcher. An Agenda outlining the afternoon’s program was circulated recently for your convenience, along with a nomination form should you be interested in nominating yourself, or someone else, to a position on the Board. Board members must be financial members of Retina Australia Vic. If you are interested in becoming a Board Member please contact the office. An afternoon tea will be provided for all attendees. Please phone Mary, 9650 5088, to indicate whether you will be attending the meeting. This shall assist us in adequately arranging catering, and providing sufficient seating. As well, some members will be gathering for lunch prior to the meeting. If you are interested in joining us, please telephone the office so that you can be given details of the lunch venue and meeting time for lunch. We look forward to seeing many of you on this special day. End of article Beginning of article CARS OF THE WORLD The 2008 event will be held at the stunningly picturesque Morning Star Estate winery in Mt Eliza. The Estate features around 70 acres of vines, the old Convent buildings and the15 odd acres of manicured gardens, including the best Rose garden on the Mornington Peninsula. We encourage all members to attend if possible, not just to support Retina and the cars, but to take part in the event and soak in the atmosphere. This year there will be several tables and chairs set out with umbrellas for members and friends to relax while they enjoy a drop of the Estate’s wine – and perhaps some local cheese too! An additional activity this year is the inaugural Auto Art Exhibition, which will be held in the Estate’s Chapel. The Exhibition is the first known of its kind in Australia – held solely to present works depicting the automobile. The attraction for members and friends, however, is the involvement of some vision impaired artists who will be displaying some of their personal works in the exhibition – a showcase of what can be achieved with low vision. The event is to be held from 10:30am to 3:00pm on Sunday 23 November at Morning Star Estate, 1 Sunnyside Road, Mt Eliza – Mel ref 105 A7. A courtesy shuttle bus may depart central Melbourne around 9:00am if there is enough interest. Please contact the office to register yours. End of article Beginning of article Have you heard... Camera an eye for the blind (courtesy of the Daily Mail and Andy Dolan, Herald Sun Friday August 8, 2008) For years, scientists have set their sights on creating bionic eye transplants to help the blind see. Yesterday they came a step closer after announcing they had made a camera that can reproduce human vision. American researchers predict it will revolutionise digital photography and video, and one day give the gift of sight. The breakthrough is a step towards the kind of sci-fi technology seen in the 1984 movie The Terminator, in which Arnold Schwarzenegger plays a robot clad in human flesh. A facial injury reveals a red, glowing bionic eye that converts vision into a stream of digital information. In the latest development, scientists have created a camera with a curved detection surface. This copies the effect of light from a subject hitting a curved human retina, which turns it into images by sending messages along the optic nerve to the brain. The American team says it is a vast improvement on the flat sensors used in digital cameras at the moment. It lets the device capture sharper images without distortion and offers a better field of view, as the human eye does. Until now, scientists had been unable to create such curved digital sensors without breaking the brittle electronic imaging material, made up of rows of silicon pixels. But teams from Illinois University and North-western University Illinois, cracked the problem by creating a hemispherical elastic membrane. This was flattened so the delicate electronics could be built on to it before it was allowed to spring back to its original shape. Professor Yonggang Huang said: “Traditional cameras focus in the middle of the shot but leave the edges fuzzy. But because this camera has a curved lens, it gives clear vision across the entire plane, just like human sight. So far, we have only developed a camera. But it opens the door to many future possibilities in the future, including human use. We would have to resolve how to connect the camera to the brain and make it compatible with the human body, but I can envisage the day when a device such as this is transplanted into a human eye socket to give the gift of sight” Professor John Rogers, of Illinois University, said the breakthrough allowed scientist to put electronics in places where they couldn’t before. End of article Beginning of article Question Time Last edition we featured a new column focusing on members. In this edition, Question Time continues with Rachel Walmsley who has kindly agreed to tell her story. Rick Clarke 1. What's your earliest memory? Walking in the garden when I was about 2. 2. What's your idea of a good time? Going out with my friends on the train, especially with my little dog, Penny. I like to go out for coffee or lunch, and visit an elderly friend. 3. What's your ideal holiday destination? Somewhere warm. The Whitsunday Islands or Africa. 4. Who inspires you? My pastor’s wife, who multitasks between home schooling and church activities, and many other things in between. Rachel & Friend 5. What makes you angry? -not having phone calls returned -being given misleading information, like wrong or out-of-date information -people being inconsiderate by moving stuff around and leaving a mess 6. What's the hardest thing you've ever done? 6. What's the hardest thing you've ever done? Put my dog to sleep. 7. What's the best thing you've ever done? I bought clothes to help a family at church because their little girl didn’t have any warm clothes and she would wake up cold. 8. What do you like about Retina Australia (Vic)? The Achiever newsletter. Don’t hold back! Volunteer today to feature in an upcoming Question Time, or to contribute an interesting personal life story you would like to share! Contact Rick through the Office. End of article Beginning of article Research Latest … Neurotech RP and MD Treatment Trials Recently the US biotech company, Neurotech, had its novel treatment for age-related Macular Degeneration and Retinitis Pigmentosa fast tracked by the Food and Drug Administration. The treatment consists of a capsule containing genetically engineered cells why may protect vision by producing a protein that could prevent the death of light-sensitive cells in the retina. The capsule is surgically implanted into a part of the eye called the vitreous humor, a transparent gel that lies between the lens in front and the retina in back. The capsule is made of a semipermeable plastic, which allows the protein produced by the genetically engineered cells to diffuse into the retina. In animal studies, the protein ciliary neurotrophic factor (CNTF), slowed the egeneration of retinal cells in diseases similar to Retinitis Pigmentosa. Furthermore, Neurotech’s chief scientific officer claims that there's evidence that CNTF could even promote retinal regeneration. In its favour, theoretically this device offers the prospect of longer-term treatment as the cells contained in the device should continue to release CNTF as long as they remain alive. Implanting the device is also relatively easy, and it’s a procedure that’s already used, for instance, with devices that release steroid molecules into the eyes of patients with intraocular inflammation. Phase I trial with 10 patients found the approach to be safe for patients with degenerative diseases of the retina. Now the challenge is to see whether the positive results in animals can be transferred to humans. Phase II trials should be able to determine this, which is scheduled for completion early 2009. Other approaches to combating degenerative retinal diseases involving, for instance, the use of embryonic stem cells, entail transplanting various kinds of cells into the retina itself to help restore its function. These approaches may result in more dramatic or long-lasting improvement than simply slowing degeneration, but the Neurotech strategy might be less risky in that if something goes wrong, the cells can be taken out by simply removing the device. Reference: Amanda Schaffer, MIT Technology Review -Cambridge, MA, USA Wednesday, September 10, 2008. End of article Beginning of article What’s New in AMD Treatments and Research? -AMD Alliance International Communiques Summer 2008 -AMD Alliance International Communiques Summer 2008 VEGF Trap – Clinical Trial Recruiting! Recently announced Phase II clinical trial results may confirm the promise of the VEGF trap as a new generation of AMD treatment. Regeneron’s VEGF trap may alleviate the burden of frequent intravitreal injections, either through longer lasting inhibition of VEGF or through other important factors in choroidal neovascular membrane formation and growth, says Carl Regillo, MD. The VEGF trap works by selectively binding and neutralizing unwanted VEGF, the protein believed to cause blood vessel proliferation. In Phase II trials, patients were monitored for drug safety and changes in retinal thickness and visual acuity. After 12 weeks of treatment, significant changes in retinal thickness were reported and there was an improvement of 5.7 letters of visual acuity with all doses of the treatment. A Phase III trial is now recruiting, comparing the VEGF trap to Lucentis. In this trial, the VEGF trap will be assessed using four and eight week dosing intervals in direct comparison with Lucentis administered every four weeks. This study aims to recruit 1200 patients at 193 sites, both US and Canada. Radiation Therapy Radiation has been tried before to treat macular degeneration, but now researchers have proposed a new and apparently more refined or focused approach, which appeared promising in early trials. In the past, radiation was directed into the eye from an outside source. In recent trials by NeoVista Inc, researchers tested a tiny source of radiation temporarily placed inside the eye near the macula, yielding good early results. The radiation, lasting approximately four minutes, is thought to destroy abnormal blood vessels and prevent the growth of blood vessels to stop the progression of wet macular degeneration vision loss. To continue the scientific process necessary to prove this theory, NeoVista has announced that a new phase III clinical trial, called CABERNET, has started accepting enrollment of 450 patients at clinical centers worldwide. This study will build on previous research, and evaluate safety and efficacy over a longer term, and with a greater number of participants. In the phase III trial, a dose of radiation will be given with two intravitreal injections of the FDA-approved antiangiogenic therapy Lucentis® (ranibizumab), comparing it to versus Lucentis alone. For those enrolled in the trial arm utilizing brachytherapy (radiation), Lucentis is injected once during the initial procedure, and again at 30 days. To be considered a successful treatment, CABERNET will need to demonstrate that radiation therapy plus two doses of Lucentis is as good as, or better than, Lucentis alone. This will be measured by gains or losses in reading from a standard eye chart. According to publicly available materials from NeoVista, the current therapy delivers a one-time peak dose of beta particle energy (24 Gy) directly to the lesion, and the normal retinal vasculature receives minimal exposure. Utilizing strontium 90, the focused energy is delivered to a target area up to 3 mm in depth and up to 5.4 mm in diameter; the radiation exposure within the ocular compartment is below the clinical threshold of observable tissue damage for all structures including the lens, optic disc, and retina. able materials from NeoVista, the current therapy delivers a one-time peak dose of beta particle energy (24 Gy) directly to the lesion, and the normal retinal vasculature receives minimal exposure. Utilizing strontium 90, the focused energy is delivered to a target area up to 3 mm in depth and up to 5.4 mm in diameter; the radiation exposure within the ocular compartment is below the clinical threshold of observable tissue damage for all structures including the lens, optic disc, and retina. Strontium 90 is considered more effective in this application than other radiation, or than previous research, because the radiation is very focused, and systemic exposure is minimal, comparable to a typical chest x-ray. As earlier mentioned, prior to the current CABERNET trial, the company had conducted a feasibility trial to test the efficacy and safety of their brachytherapy device when used concomitantly with two intravitreal injections of Avastin® (bevacizumab). At the 1 year follow-up, evaluation of 33 participants, subjects had experienced a mean improvement in best-corrected visual acuity of 10 letters from baseline using the ETDRS chart. Most adverse events were related to the vitrectomy procedure (retinal tear, retinal detachment, subretinal haemorrhage, and vitreous haemorrhage). No events related to radiation toxicity have been reported to date. Avastin was used in this trial because Lucentis was not commercially available at that time. As noted above, current trials will use Lucentis. End of article Beginning of article BREAKING NEWS -TWISTS AND TURNS IN ROAD TO AMD TREATMENTS AMD ALLIANCE INTERNATIONAL , 18 JULY 2008 Alcon today announced the termination of their trials and development of anecortave acetate (Retaane) for treatment of macular degeneration. Alcon made the termination decision after results from clinical trials of the drug, involving 2546 patients, showed no improvement in visual acuity or reduction in lesion size. However, anecortave acetate is approved for market use in Australia and pending approval in South Africa. Contacted by AMD Alliance International today, Alcon spokesperson Doug McHatton said, “We have no plans to withdraw the drug from countries such as Australia and South Africa.” Although this is clearly the end of the road for anecortave acetate in either dry or wet AMD, Alcon says they will continue their research to see if the drug is useful for treatment of intraocular pressure associated with glaucoma. End of article Beginning of article EARLY BIRD DIARY DATES DIARY DATES RETINA AUSTRALIA CONGRESS 2009 BRISBANE 24 & 25 OCTOBER 2009 Yates has supported Retina Australia since 1999. Since then over $84,000 has gone into the national research pool through the donations from Retina Australia NSW from the cheques presented to them at the annual major Fundraiser. So don’t forget to buy your packets of Cosmos Bright Eyes again this summer so that Yates can continue to support research into Retinal Dystrophies. Gardener’s tip Purchase one of Yates Tuscan pots and fill it with Yates premium potting mix. Add one or two packets of Cosmos Bright Eyes and water. Continue to water with Thrive and throughout summer you will have a beautiful flower arrangement for your BBQ table. (Needs full sun). End of article Beginning of article For your Information . . . . . . Commencement of Low Vision Services at University of Melbourne Eyecare The Department of Optometry and Vision Sciences, of the University of Melbourne is about to commence provision of Low Vision Services at its newly established University of Melbourne Eye Care practice at 2/800 Swanston Street, Carlton. (this is directly across from Gate 3 of the University) The low vision optometric care provided would involve an experienced optometrist on the University staff and final year Bachelor of Optometry students within a brand new clinic. If you would like further information please contact the clinic by telephone, 03 9347 1714, fax 03 9347 5329 or via email uni-eyecare@unimelb.edu.au End of article Beginning of article Christmas Cards Due to the ever increasing administration demand and the associated costs of selling charity Christmas Cards, the Board has unfortunately been put in the position of making an economic decision not to order new cards for sale this year. We do have some packs of Christmas Cards in the office for sale on a first come first served basis. If you are interested in purchasing any of the following packs of cards, please phone the office (03 9650 5088) on either Tuesday or Thursday between the hours of 9am and 3.30pm. Gold Card with Green Christmas Tree -$3.00 per pack of ten cards Assorted Pack of ten Cards -$3.00 per pack 16 Christmas Gift Cards -$1.00 per sheet of 16 cards (7cm x 7cm) End of article Beginning of article Collector’s Items (merchandise) Add to your spoon collection and support Retina Australia with your $5.00 donation in return for your purchase. Light up your locks with a Super Bright Mini Flash Light for a mere $4.00 Contact the office for details of how to purchase 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: ............................................................................................. ......................................... ………….. POSTCODE: …………….. TELEPHONE/S: …………………………………………………………… NEW EMAIL: ………………………………………………………………. 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. Retina Australia (Vic) Inc. 4th Floor, Ross House 247 – 251 Flinders Lane, Melbourne, VIC 3000