Retina Australia QLD Inc. Quarterly Newsletter Eye Q News Spring Edition 2008 - September Issue 83 Editor Jeffrey Dougall T. 07 300 300 65 F. 07 300 300 65 Free Call 1800 000 999 Email: admin@retinaqld.org.au Postal Address PO Box 16295 Brisbane City East QLD 4002 Office Location Level 1 46 George Street Brisbane QLD 4000 Easy Search hints: Each Article Begins with 3 stars *** Each sub heading within an article starts with 3 hashes ### ***Article Presidents Report ###Heading WEBSITE Thanks to a lot of time, expertise and effort by Jeff Dougall the RAQ website retinaqld.org.au is now up and running. The site will be further developed as needed and we would be pleased to hear from you if you have ideas about any information you think should be included. ###Heading MEMBERSHIP RENEWAL Just a friendly reminder membership renewal fees are now due. I think due to a mix-up some members may not have received a renewal notice with their last newsletter. Thank you to all those who have re-joined promptly and to those who were able to make a donation towards our research pool. One anonymous family member made a whopping donation of $20,000. I phoned to thank them personally and to assure them this would go 100% towards the national research pool. You can renew your membership on line at retinaqld.org.au, by phoning the office and providing your credit card details or by posting a mail order or cheque. ###Heading ANNUAL GENERAL MEETING The 19th AGM will be held in our office on Saturday 13th September. An Agenda is included with this newsletter. Guest Speaker will be our National President, Graeme Banks who is coming to Brisbane especially to attend our meeting. And, I might add, he is coming at his own expense. Graeme has recently returned from the Retina International Congress in Helsinki which brought together most of the World’s top retinal researchers. I am sure Graeme will be able to provide some interesting information about the latest research developments. He will also talk about the need to urgently establish a Inherited Retinal Disease Family Testing Program throughout Australia to take advantage of any forthcoming genetic treatments. The program would record the entire family history and include blood or saliva samples. It is a very expensive but much-needed program that all of us with an inherited retinal eye disease will want to get involved with. This will be a very well-attended meeting. It is essential you contact the office to advise of your attendance and I suggest you do so as soon as possible. I, and the entire Management Committee, look forward to seeing you there. ###Heading WORLD RETINA WEEK World Retina Week is just around the corner. It runs from Sunday 21st to Saturday 27th September. As you are aware, this is our major information and fund-raising event of the year. We have a beautiful new owl badge, a great pen and a very useful keychain light for sale to raise funds for our retinal eye research. They can be seen on our website. If you can help out by showing them to friends, workmates etc, please phone Anne and we will get some out to you. Every little bit helps! And even though it is very early, remember we have a great range of Christmas cards available. They can be viewed and ordered on our website or by phoning the office. That’s all for now. I hope to see many of you at the AGM. Signed Graeme Ferguson President ***Article 2009 Congress As previously advised, the Retina Australia National Congress will be held in Brisbane on 24th & 25th October 2009. Our Congress Committee spent much time looking at venues most suited to vision-impaired people. The venue selected is Royal on the Park, A very nice hotel on the corner of Albert & Alice Streets in the CBD right opposite the City Gardens. Everything is on one level and it is within walking distance of trains, buses, other accommodation and restaurants. Every avenue will be pursued to keep costs down and make it a value for money event. So start planning now and turn your visit into a short holiday. Enjoy the Congress as well as Brisbane’s fantastic spring weather. Updated information will be provided as it comes to hand. The final program will be available in early 2009. Please contact us if you have any ideas for workshops etc. ***Article Carl Baird Walk for change update Carl Baird is an 11 year old affected by Retinitis Pigmentosa. Determined to confront the issue of bullying at his school and to raise awareness of Retinitis Pigmentosa, Carl decided on his own initiative to undertake a walkathon. It took place at the Springfield Lakes State School, on Saturday 21st June. With the help of his Parents Mark & Raewyn, the Springfield Family Christian Church, the Principal & Staff of the Springfield Lakes State School and many others, it was a very successful and enjoyable event. Family, friends and his schoolmates supported Carl on his walk. They completed many laps of the school’s oval over a 3-hour period. One-third of the funds raised have been donated to RAQ for eventual distribution to the Retina Australia Research Program. Well-done Carl! Thank you for the awareness you created and let’s hope those bullies get the message that bullying is totally unacceptable. ***Article Sponsor Eye Research Buy A Yates Flower 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 Retinitis Pigmentosa. ###Heading A gardening tip from Robyn 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). ***Article Entertainment Book The current issue of the Entertainment book is running out. It is valid until June 2009 and represents great value at $60 plus postage. It is choc-full of discount vouchers for eating out from takeaway deals and casual dining to fantastic fine dining in some of the best restaurants in Brisbane and the Gold and Sunshine coasts. Also discounts on hotel accommodation, entertainment and much more. Get your book now by ordering on line or phoning the office. And don’t forget it is a great gift for Father’s Day! ***Article Clinical Trial Helps 3 peopl see A landmark clinical trial of gene therapy that’s helped three young adults with Leber congenital amaurosis, or LCA, to regain some of their sight is paving the way for potentially saving and restoring vision in people affected by a wide range of retinal degenerative diseases including: retinitis pigmentosa, Usher syndrome, Stargardt disease, and macular degeneration. Specifically, researchers are planning to implement the same innovative gene delivery technology used in the LCA study in gene therapies for other retinal diseases. In the LCA trial at The Children’s Hospital of Philadelphia (CHOP), a man-made therapeutic virus known as an adeno-associated vector, or AAV, was used to deliver the gene to the retina. Over the years, safely and effectively getting the therapeutic gene to the retina has been a challenging proposition, but newer AAVs have performed well. Alberto Auricchio, M.D., of the Telethon Institute of Genetics and Medicine and “Federico II” University in Naples, Italy, a leading AAV developer, is collaborating with the Foundation-funded LCA clinical trial at CHOP. He has conducted preclinical studies of other AAV variations in treatments for Usher syndrome, Stargardt disease, and other forms of LCA. His results are very promising. The keys to successful gene delivery include: 1) Getting the gene to penetrate the desired retinal cells; 2) Activating the gene once it is in the cells; and 3) Ensuring the gene does not get distributed beyond the desired cells. An issue that has been particularly challenging is the development of a delivery mechanism that is able to carry larger genes such as ABCA4 (for Stargardt disease), MYO7A (for Usher syndrome 1B), and CEP290 (a form of LCA). But Auricchio has developed AAVs that are able to carry larger genetic cargo, including the genes mentioned above, and they have performed well in animal studies. Auricchio is collaborating with other Foundation-funded researchers — including Jean Bennett, M.D., Ph.D., lead investigator at CHOP — to move AAV-based gene therapy forward, and ultimately, into more human studies. “We are very excited about the promise AAVs hold for treating a variety of retinal diseases,” says Stephen Rose, Ph.D., Chief Research Officer, Foundation Fighting Blindness. “Dr. Auricchio has done a great job in demonstrating their potential in preclinical investigations, and we are working with him and his collaborators to move them into the clinic as quickly as possible.” ***Article New AMD Animal model New Animal Model May Lead to Better Treatments for AMD For the first time, Foundation-funded scientists have created an animal model of age-related macular degeneration (AMD) that closely represents the vision-robbing disease in humans. This advancement gives biopharmaceutical companies a new and invaluable platform for the development of therapies that can stop the AMD process at an early stage, before any vision is lost. And, this new mouse model will help us move closer to a cure for all forms of AMD — both wet and dry. The model was developed by Foundation-funded researcher Joe Hollyfield, Ph.D., and his colleagues at the Cleveland Clinic. They were able to create the same immune-system response in mice that causes AMD in humans. These mice developed drusen — the deposits in the retina that are present in virtually all people affected by AMD. The investigators' findings were reported in the January 27, 2008 issue of Nature Medicine, one of the most prestigious research journals in the world. The fact that this publication covered this project is indicative of the magnitude of the advancement. Over the past three years, great progress has been made in the fight against the wet form of AMD. Since 2004, Macugen® has been available for halting the growth of vision-robbing blood vessels under the retina — the hallmark of wet AMD. Since 2006, Lucentis™ has been impressively effective in stopping the growth of these unhealthy blood vessels. Numerous studies funded by the Foundation in the 1990s provided the makers of both Macugen and Lucentis with clear targets for developing effective treatments. However, these current therapies are only effective in treating wet AMD — a later stage of the disease. There still is no cure for either dry or wet AMD, and millions of people are still at risk of losing their vision to both forms of the disease. It’s important to note that a genetic breakthrough made by Foundation-funded researchers in 2005 — the identification of certain variations in a gene called CFH that dramatically increase the risk of AMD — helped lay the groundwork for Hollyfield’s development of this AMD model. CFH is one of the genes that controls the immune system. Foundation funding also enabled Hollyfield to study donor eyes from people affected with AMD, which provided him with important information about the disease process for developing the mouse model. The fight against a devastating and complex disease like AMD is not an easy one. It’s a step-by-step process that requires collaboration and persistence. The Foundation is both strategic and aggressive in funding the research that will lead to better treatments, and ultimately, a cure. ***Article Retina Transplant Shows Promise Preliminary research shows encouraging results with transplantation of retinal cells in patients with blindness caused by retinitis pigmentosa (RP) and age-related macular degeneration (AMD), according to a report in the August issue of American Journal of Ophthalmology. In the FDA-monitored study, Dr. Norman D. Radtke of University of Louisville, Ky., lead author of the study and colleagues performed the experimental transplant procedure in ten patients with vision loss resulting from retinal degeneration: six patients with RP and four with the "dry" form of AMD. Although they have different causes, both RP and AMD lead to destruction of the light-receiving (photoreceptor) cells of the retina. There is currently no effective treatment for recovery of visual loss from either condition. All patients underwent transplantation of fetal retinal cells. The cells were implanted along with their attached retinal pigment epithelium, which plays a key role in nourishing the photoreceptor cells. The concept behind the experimental procedure was that the new cells would grow to replace the damaged photoreceptor cells, connecting to the patient's remaining retina. Follow-up testing showed visual improvements in seven of the ten patients: three of the patients with RP and all four patients with AMD. Although vision remained in the "legally blind" range for all patients, the gains in vision were significant and measurable. "This clinical evidence shows the promise of our method to alter progressive vision loss due to incurable degenerative diseases of the retina," comments Dr. Radtke. In one patient with RP, the visual improvement was still present up to six years after surgery, while vision in the opposite (untreated) eye continued to deteriorate. In the same patient, specialized tests showed a 27 percent increase in light sensitivity in the treated eye. There were no problems with rejection of the transplants by the patients' immune systems, despite the lack of a perfect immunological match between the transplant donors and recipients. This likely reflected the special "immunologic protection" of tissues within the eye. Two patients also had improved vision in the untreated eyes. The reason for this unexpected result is unknown, but may involve some effect of transplantation on the immune system. The experimental transplant procedure was designed on the basis of animal studies showing that transplantation of retinal cells can lead to the development of new retinal tissues. Previous "phase I" studies established the safety of the procedure. The new "phase II" trial provides the first evidence of improved vision the first treatment of any type to restore lost vision in patients with RP or AMD. Much further research will be needed to determine the potential for retinal transplantation to improve vision in patients with these diseases. "Retinal implants that combine retina and retinal pigment epithelium demonstrated an apparent ability to integrate with host retinas and to re-establish the visual pathways interrupted by disease," adds Dr. Radtke. "What we have learned will help us to refine this method and obtain further evidence that retinal implants may be a viable therapy for retinal degenerative disease." ***Article Colour in competition for the children This years owl badge is the Snowy White Owl. A picture of the owl maybe downloaded from our web site for the kids to download. Colour it in, send to Retina Australia for a chance to win 5 owl badges and a black and gold Retina Australia pen. Runner ups win 1 black and gold pen. Entries close September 11 2008. Winners announced at the AGM. ***Article Find The words competition Find and circle the words below for your chance to win 5 owl badges and a black and gold Retina Australia pen. Entries close September 11 2008. Winners announced at the AGM. B A D G E N E T I C P T L P A N C O G S E R E S O T C A R A T A C S M O O O L T E E T I H W E S P R I N G N T C G Y I N F T T N B O G W A L K A T H O N I H N F M I O T N W E P R B F A G E I C W I O D T N I I N L E P U A L I M N A G D C C E R A R E T I N I T I S O R T M D O M P G O Q T S D F C U O R R O A A A G S M C E E L R A A L M N Y D M R C I T P O R L N A D N H S O S A N H A P S Y O C S Y I E E . O P S W T Y T C R Y W S W S S A I R C O N G R E S S T E S A E S I D T D R A G R A T S R N S S E N D N I L B G N I T H G I F E S E E H S G F Q N Y R O T S I H . R H N M A C U L A R E G D A B L W O V A S O H R R U O T S A Y W C T T O E N N U W C C O E R H Y E N E I O E R R E H S Y S H T R C E L Z Z U P L I L P E K C I C O L O U R A T I T O T U D N N D I R Badge Cane Carl Baird Cataractos Cataracts Coffee Colour Competition Congress Cornea Cosmos Cure Daisy Day Degeneration Dinner EyeQNews Father Fighting Blindness Flowers Fundraising Genetic Gift History Iris Fundraising Genetic Lions Macular Morning Nerve Newsletter October Optic Owl Owl Badge Pens Phase Pigmentosa Puzzle Research Retinaqld.org.au Retinitis Sight Snowy Spring Stargardt Disease Torches Usher Syndrome Walkathon Week White World Yates ***Article Cataracts and how is surgery done Cataracts are changes in clarity of the natural lens inside the eye that gradually degrade visual quality. The natural lens sits behind the coloured part of the eye (iris) in the area of the pupil, and cannot be directly seen with the naked eye unless it becomes extremely cloudy. The lens plays a crucial role in focusing unimpeded light on the retina at the back of the eye. The retina transforms light to a neurologic signal that the brain interprets as vision. Significant cataracts block and distort light passing through the lens, causing visual symptoms and complaints. The term cataract is derived from the Greek word cataractos, which describes rapidly running water. When water is turbulent, it is transformed from a clear medium to white and cloudy. Keen Greek observers noticed similar-appearing changes in the eye and attributed visual loss from "cataracts" as an accumulation of this turbulent fluid, having no knowledge of the anatomy of the eye or the status or importance of the lens. Cataract development is usually a very gradual process of normal aging but can occasionally occur rapidly. Many people are in fact unaware that they have cataracts because the changes in their vision have been so gradual. Cataracts commonly affect both eyes, but it is not uncommon for cataracts in one eye to advance more rapidly. Cataracts are very common, affecting roughly 60% of people over the age of 60, and over 1.5 million cataract surgeries are performed in the United States each year. Experts have estimated that visual disability associated with cataracts accounts for over 300,000 physician office visits a year in Australia. This number will likely continue to increase as the proportion of people over the age of 60 rises. When people develop cataracts, they begin to have difficulty doing activities they need to do for daily living or for enjoyment. Some of the most common complaints include difficulty driving at night, reading, participating in sports such as golfing, or travelling to unfamiliar areas; these are all activities for which clear vision is essential. ###Heading Cataract Causes The lens is made mostly of water and protein. Specific proteins within the lens are responsible for maintaining its clarity. Over many years, the structures of these lens proteins are altered, ultimately leading to a gradual clouding of the lens. Rarely, cataracts can present at birth or in early childhood as a result of hereditary enzyme defects, and severe trauma to the eye, eye surgery, or intraocular inflammation can also cause cataracts to occur earlier in life. Other factors that may lead to development of cataracts at an earlier age include excessive ultraviolet-light exposure, diabetes, smoking, or the use of certain medications, such as oral, topical, or inhaled steroids. Other medications that are more weakly associated with cataracts include the long-term use of statins and phenothiazines. ###Heading Cataract Surgery The standard cataract surgical procedure is typically performed in either a hospital or in an ambulatory surgery centre. The most common form of cataract surgery today is a process called phacoemulsification. With the use of an operating microscope, your surgeon will make a very small incision in the surface of the eye in or near the cornea. A thin ultrasound probe is inserted into the eye that uses ultrasonic vibrations to dissolve (phacoemulsify) the clouded lens. These tiny fragmented pieces are then suctioned out through the same ultrasound probe. Once the cataract is removed, an artificial lens is placed into the same thin capsular bag that the cataract occupied. This intraocular lens is essential to help your eye focus after surgery. There are three basic techniques for cataract surgery: Phacoemulsification: This is the most common form of cataract removal as explained above. In this most modern method, cataract surgery can usually be performed in less than 30 minutes and usually requires only minimal sedation and numbing drops, no stitches to close the wound, and no eye patch after surgery. Extracapsular cataract surgery: This procedure is used mainly for very advanced cataracts where the lens is too dense to dissolve into fragments (phacoemulsify) or in facilities that do not have phacoemulsification technology. This technique requires a larger incision so that the cataract can be removed in one piece without being fragmented inside the eye. An artificial lens is placed in the same capsular bag as with the phacoemulsification technique. This surgical technique requires a various number of sutures to close the larger wound, and visual recovery is often slower. Extracapsular cataract extraction usually requires an injection of numbing medication around the eye and an eye patch after surgery. Intracapsular cataract surgery: This surgical technique requires an even larger wound than extracapsular surgery, and the surgeon removes the entire lens and the surrounding capsule together. This technique requires the intraocular lens to be placed in a different location, in front of the iris. This method is rarely used today but can be still be useful in cases of significant trauma. ***Article Cataracts in Children In a normal eye, the cornea and lens focus objects on the retina. The lens should be transparent and able to change its focus to close up or far away. However, in some children the lens is opaque - a bit like the cooked white of an egg. This is called a cataract, and it means that light and images cannot reach the retina. It can occur in one or both eyes. ###Heading What causes childhood cataracts? No identifiable cause is found in more than one third of infants born with cataracts in both eyes, and in over 90% of children with only one affected eye. Some causes are known. For example, cataracts may be inherited from either parent and so the parents, brothers and sisters of affected children are examined in every case as other members of the family may have a partial cataract, which doesn’t affect their vision. Some affected eyes may be slightly smaller than usual or have another eye condition as well as the cataract. Approximately a quarter of children, usually those born with cataracts in both eyes, have other associated problems. For example, Rubella infection (German measles) can cause multiple disabilities, one of which is cataracts (in one or both eyes) resulting from infection early in pregnancy. These may be present at birth or develop in the first year of life. Rarely, other infections during pregnancy may cause cataracts in the newborn child. Cataracts are common in young children with Down’s syndrome, although they are not always bad enough to need to be removed. A number of other rare general conditions (syndromes) can also result in cataracts. Some of these can be checked for through blood tests. As some of these conditions are inherited many children with cataract, together with their families, are seen in hospital by a clinical geneticist, who can help with diagnosis and provide advice about the risk of cataracts in future children. Some children develop cataract later in childhood. This can be due to injury, drug exposure or radiation, or associated with other eye problems such as retinal disease. If no cause is found, it is possible there were slight cataracts at an earlier age that were not noticed until they started to cause problems. ###Heading How is childhood cataract diagnosed? Careful visual assessment is carried out using simple methods, such as watching the steadiness of your child’s eyes and whether they prefer to use one eye all the time. Special visual assessment cards (acuity cards) and electrical tests which pick up signals from the brain’s visual areas may also be used. None of these tests is painful or harmful for your child. Both unilateral (one eye) and bilateral (both eyes) cataracts in newborn babies can prevent them from getting enough visual stimulation during an important stage of development. If untreated, or treated late, this can lead to permanent changes in areas of the brain where vision is controlled, and cause reduced vision in one or both eyes. It is therefore important to do surgery as early as possible, preferably before three months of age, although children operated after this age may still develop reasonable eyesight. ***Article Discount on virus scanner ESET, located in Brisbane has offered a special reduced price of $72.50 for their virus scanner called NOD32. Normally NOD32 costs $96.75 for a 2 year license. Ring their Brisbane office on 3325-2999 and let them know you are legally blind. A demo version maybe downloaded from their site: www.nod32.com.au ***Article Free Virus Scanner AVG Free Anti-Virus Software For those on a tight budget like me, the AVG free anti-virus software is still available. You may download a copy of AVG free version at the following web link. free.avg.com ***Article Coffee mornings Coffee mornings are held on the 2nd Friday of each month from 9:30am until 11am. The next few dates are September 12th, October 10th and November 14th. Peter Vance will be singing at the November coffee morning so do your best to come along and enjoy the fun. ***Lions Anual white cane dinner The familiar white cane with a red band at the bottom is used by blind and visually impaired persons in many countries. Lions help to increase awareness of the use of the white cane and laws governing its use. Specific days or weeks may be designated for white cane events worldwide. During these times Lions help to educate the public about the aspirations, hopes and abilities of people who are blind or visually impaired. In 1970, the President of the International Federation of the Blind declared October 15 as “International White Cane Safety Day.” Lions Brisbane and Ipswich Dinner The annual Brisbane White Cane Dinner will be held on the 15th October, 6:30pm for a 7pm start. Venue is Chermside Bowls Club, $26/head (includes 2 free drinks). RSVP by Monday, 6th October and also advise if transport is required. Guest speaker will be Frank Burchill from Aid for the Blind who will speak on the association with Griffith University. Dinners for White Cane Day are held by Lions all over Australia. Please check with your local VIP support group to find out the date for your town. Ipswich residents should contact Michael Aunt. Michael will provide the dates and arrange for your return transport to the dinner. ***Article History of the White Cane In 1921, James Biggs, a photographer from Bristol, England became blind following an accident. Because he was feeling uncomfortable with the amount of traffic around his home, he ainted his walking stick white to be more easily visible. In 1930, Lion George A. Bonham observed a man who was blind attempting to cross the street with a black cane that was barely visible to motorists against the dark pavement. The Lion offered to paint the cane white to make it more visible. By 1931, the Peoria Lions Club approved the project and white canes were made and distributed. The Peoria City Council adopted an ordinance giving the bearers the right-of-way to cross the street. The news of the club’s activity spread to other Lions Clubs, and the white cane became known by the blind and sighted alike as a means of identifying the safe mobility needs of the visually impaired. In 1931, Lions Clubs International began a program promoting the use of White Canes for people who are blind. Also in 1931, in France, Guilly d’Herbemont recognized the danger of blind people in traffic and launched a national “white stick movement” for blind people. She donated 5,000 white canes to people in Paris. While the White Cane is commonly accepted as a “symbol of blindness”, various countries have different rules concerning what constitutes a “cane for the blind.” In the United Kingdom, for example, the White Cane is recognized as being used by visually impaired persons; if the cane has two red bands added, it indicates that the user is deaf-blind. Some countries recently introduced a yellow banded white cane for use by vision impaired people and the red band for totally blind people. ***Article This ends the Spring 2008 edition of Eye Q News