1st Edition 2002

RETINA ADVERT RECEIVES INTERNATIONAL RECOGNITION

Grey Worldwide in South Africa developed an innovative Television Advert for Retina South Africa last year. The 30 second TV ad featured a typed script transforming into Braille. The Ad was aired on South African TV last year as part of World Retina Week. Grey Worldwide South Africa received a Bronze Clio for the ad, one of only 10 awards won by South African Advertising agencies. We congratulate the team at Grey and are proud to have them as our advertising agency.

5 BEAUTY QUEENS DAZZLE PORT ELIZABETH -The Port Elizabeth branch of Retina South Africa staged their first Be-Dazzled Fashion & Beauty Extravaganza on 2nd May 2002. 500 guests attended the Black Tie Gala event, special guests included Bruce Fordyce & M Net's Marius Roberts. 5 of the 18 models showing Jason Kieck's stunning garments were ex Miss South Africa's. Miss SA 1958 and Miss World Penny Rey Coelen, Miss SA 1995, Bernalee Daniel, Miss SA 1998, Sonia Raciti, Miss SA 1999, Heather Hamilton and Miss SA 2001, Vanessa Carreira.

Well known singers Joseph Clarke and Kate Normington entertained the guests with songs from Phantom of the Opera and Beauty and The Beast. The entire evening focused on vision, the gowns, décor, flowers and gifts were all designed around the vision theme. St Georges Hospital, The Vision Centre, Flowers PE and Radio Algoa were the major sponsors. The event raised R40 000 for Retinal Research. Plans for next year's event are already underway.

Congratulations to Gail Cillie and Sandra Kieck for organising this classy event.
Pictured from left to right: Bernalee Daniel, Vanessa Correira, Gordon Cousins (National Chairman, Retina South Africa), Gail Cillie (Chairman Port Elizabeth), Sonia Raciti, Heather Hamilton and Penny Rey Coelen.

LIBERTY RIDE FOR SIGHT 2002

This annual cycling event organised by the Gauteng branch of Retina South Africa was held on the 24th February 2002. This year around 5000 cyclists took part in the 58km and 112km events, raising R120 000 for our Gene Tracking Project. The main event was won by Ian McLeod in a time of 2:36:22. Retina South Africa would like to thank Liberty, Dischem and all the other sponsors for their support. We would also like to thank Springs Wheelers our cycling club, Alberton Amateur Radio, Red Cross, Aberdare Cables, our portfolio supervisors and over 300 volunteers for an excellent job. Douglas Ryder, captain of the South African Cycling Team commended the race as one of the best organised cycle events in the country.

TOUR DE LESOTHO - 13th April 2002 - This gruelling event, cycling up 3 of Lesotho's most challenging mountains continues to attract the cream of South African Cyclists. The field grows annually and this year the main event was dominated by the HSBC Team. Malcolm Lange took the title for the 3rd time and retained the trophy. Lesotho Sun hosted the event, which was sponsored by Nedbank (Lesotho) Limited, B& E Lesotho (Pty) Limited, Quadrant , M & C Construction International (Pty) Ltd, Ashcor (Pty) Ltd, Avis, Bensons Quality Fresh Meats and Coca Cola. Retina South Africa and the Lesotho Association for the Visually Impaired are joint beneficiaries for the event. Congratulations to Andries Bester of Lesotho Sun his superb organisation of the event. (Can I get to go in the helicopter next year? - Editor)

SAGE LIFE ART COMPETITION - The North Gauteng Branch organised a schools art competition with the theme "The Gift of Sight". The entries were displayed at the National Cultural Museum during May and early June.

The mayor of Tshwane visited the exhibition together with hundreds of Gauteng school children. The display of art and posters on Retinal Degeneration affords Retina South Africa a wonderful awareness opportunity. Pictured from left to right: Nio Maloa (Manager of African Window), Poppie Strydom (Chairman, North Gauteng), Councillor Smangiliso Mkhatshwa (Mayor of Tshwane) and Edith Theron (Co-ordinator of the Art Project). Thanks go to Sage Life who sponsored the event.

RETINA INTERNATIONAL CONGRESS - JAPAN - 31 July 2002 to 5 August 2002. Retina South Africa will be sending 4 representatives to the Bi-ennual World Congress. They are Gordon Cousins (National, Chairman), Claudette Medefindt (National Secretary) who have both been nominated to the International Management Committee. James Cape (Gauteng, Chairman) and Roy Abbott (Cape of Good Hope, Chairman). James and Roy are both recipients of sponsorships to attend the congress. James has been sponsored by Italtile and Roy has been sponsored by Mr Brian van Rooyen of Labat Africa. Sayonara!!!!!

RESEARCH NEWS - The Annual Meeting of the Association for Research in Vision and Ophthalmology (ARVO) was held in Fort Lauderdale, USA, in May. This is the largest meeting on vision research in the world and is attended by thousands of Researchers from around the world. Tom Hoglund from the American Foundation Fighting Blindness summarised some of the highlights:

RETINAL CHIP RESEARCH - Obviously, retinal chip research generated considerable media excitement. As we reported previously, Dr. Alan Chow of Optobionics presented unpublished findings from a phase one clinical trial testing safety of the company's Artificial Silicon Retina, a highly experimental device designed to mimic photoreceptor cell function. The Foundation is pleased to learn that the six patients in this study have not experienced complications from the device. We anxiously await published study data that can objectively evaluate and verify the subjective claims made by the patients regarding small improvements in vision. Nonetheless, it is very encouraging to see this research field reach clinical trials

STEM CELLS - ARVO - provided the clearest picture yet of stem cell research. There were many studies evaluating the steps necessary to biologically coax stem cells taken from adult sources to become fully functioning photoreceptor cells. Adult retinal stem cells share some but not all biologic properties with photoreceptor cells. During the course of human development, various genes instruct a stem cell to mature into a certain cell type in the body. For a retinal stem cell to mature into a functional photoreceptor cell, one of the most complex cell types in the human body, requires that a number of developmental genes function properly. Thus, for adult retinal stem cells to become a viable transplantation source, Foundation researchers must document and then replicate this complex biological process. ARVO witnessed a number of researchers beginning to trace this process.

DRUGS AND DRUG DELIVERY - Although Foundation researchers have discovered several promising drug therapies, further progress has been hampered by an inability to safely deliver drugs to the retina. Most drug compounds cannot cross the blood/retina barrier, making systemic administration impossible. Last year, The Foundation sponsored a meeting to further spur the development of novel drug delivery systems. ARVO provided evidence that The Foundation's efforts are working. Several new and existing research teams presented hopeful work. With safe drug delivery devices, a number of promising drug therapies should enter clinical trials.

GENE THERAPY - ARVO also provided a chance to hear an update on efforts to advance gene therapy treatments to clinical trials. The Briard dogs that suffer from a severe form of RP were treated with gene therapy almost two years ago.

Foundation researchers reported that the dogs are still able to see and have not experienced complications from the treatment. Another litter of dogs was recently treated. Plans are also underway to test the safety of gene therapy in additional animal models. In this way, the safety of gene therapy can be evaluated in more that one species. Results from these studies will offer the Food and Drug Administration the safety data they require to approve human clinical trials.

GENETICS AND CELL BIOLOGY - Foundation researchers also presented numerous genetic and cell biology studies to identify and better understand the causes of vision loss. These studies, which represent the backbone of retinal degenerative disease research, make treatment breakthroughs possible. For example, gene therapy is only possible once a mutant gene is identified. Many drug therapies discovered over the last decade rely on genetically encoded proteins that promote the survival and health of photoreceptor cells. Stem cell research depends on an understanding of developmental cell biology and genetics.

The Foundation's thirty-year investment in basic research has created numerous possibilities to treat and cure blinding, retinal degenerative diseases. Foundation researches have pioneered entire research fields devoted to advancing treatments and cures. The hundreds of studies on retinal degenerative diseases presented at ARVO make clear that vision research is realising rapid growth. Although more work is needed, it is heartening to look forward knowing how much progress has been made in just the last few years.

INTERNATIONAL SCIENTIFIC MEDICAL ADVISORY BOARD

MEETING (SMAB) - The American Foundation Fighting Blindness hosted a SMAB meeting during the ARVO Conference. 32 Scientists from 16 countries met to discuss the latest developments in Retinal Research. Retina South Africa was represented by Professor Trevor Carmichael from Wits University. One of the points discussed was Lutein supplementation. The meeting agreed that although this increases the density of macular pigmentation, the effects of lutein supplementation on vision was still under investigation.

Lutein supplementation was not recommended for children, pregnant women and smokers. The SMAB felt it was still too early to formally recommend Lutein supplementation to RD patients.

NB!!!! A special discount price of R80 for 2 bottles of Lutein (including registered postage), is being offered to Social Pensioners. Contact Mary at the National Office, please include a copy of your pension card with your order.

STOP PRESS!!!

8 Cortical Implants have been performed at the Dobelle Institute in Portugal. This artificial vision system uses a miniature television camera mounted on the lens of a pair of spectacles, sending an image to a micro computer system worn on the belt. The system then sends messages via cables to the implant screwed into the skull. The visual cortex, the part of the brain responsible for vision responds by producing flashes of light- phosphenes. 4 out of 8 patients reported that the phosphenes were "brilliantly coloured", patients will have to be trained to interpret these phosphenes into some form of vision. Dr Dobelle said that the system was designed primarily for mobility. The implants were done in April at a cost of $75 000 US each.

MACULAR DEGENERATION NEWS - Age Related Macular Degeneration - The European Committee for Propriety Medical Products (C.P.M.P) has recommended to the European Union that Visudyne (Verteporfin) treatment be extended to include occult CNV in wet AMD. Visudyne has been used in Photodynamic Therapy (PDT) to treat mainly the classic form of CNV in wet AMD. Occult and Classic refers to the type of leakage into the Choroido Neuro Vascular membrane that causes such devastating vision loss in wet AMD. PDT therapy is available in South Africa through selected private Retinal specialists. AMD is thought to affect between 13 to 30 million people worldwide and is the leading cause of blindness in people over the age of 50.

NEW THERAPY FOR AMD IN TRIALS - Preliminary results of a Phase 2 clinical trial of Alcon's Anecortave Acetate Therapy for Wet AMD were presented at ARVO by Dr Jason Slater. The studies include a six month study of 128 patients who received a single dose of AAT. These patients showed a 25% less loss of visual acuity, compared to untreated patients. AAT was also used to treat post PDT patients. 136 Patients will receive AAT every 6 months for 24 months. After the initial 6 months, 18% of these patients had improved vision of at least 2 lines on the VA chart.

VIAGRA & AMD STUDY - 9 Patients ages between 59 - 85 years with early stage AMD were given a single 100mg dose of Sildenafil Citrate (Viagra). Tests using visual acuity, Amsler Grid, colour discrimination,
Humphrey perimetry and photo stress showed no changes of any visual function between these 9 patients and a control group.

SOUTH AFRICAN RETINAL REGISTRY - A paper on the establishment of UCT's excellent registry of 1829 Retinal Patients was published in the March 23rd Edition of Ophthalmic Genetics. Remember your details are kept entirely confidential. Even in collaborative studies, patient's names are not used - your DNA receives a code known only to the researchers at Cape Town University. Your records at Retina South Africa are also not released to any other parties.

REFSUMS DISEASE E-MAIL GROUP - Contact Di Harman - e-mail address: Dijon@alphalink.com.au.
Would you like to be on a local e-mail group: e.g. Stargardts, LCA, Usher or Parents? E-mail your special interest and e-mail address to national@rpsa.org.za and we will circulate to other interested parties.

HOUSING SUBSIDIES - 35 Members of Retina South Africa are being fast tracked for housings subsidies by the Gauteng Department of Housing thanks to the work of Veli Dhlamini our Social worker. Houses being built in various areas are being customised for the visually impaired. If you are over 21, have a visual disability and dependants and have never owned property, contact Veli on 0860 59 59 59 (local call costs apply).

WORLD RETINA WEEK 2002 - Please start taking orders for "Is it in your Genes Patches" at work, school and in your community. Patches cost R2 each and we are trying to promote Jeans for Genes during the last week of September.
Orders to Sandy at the National Office: 0860 59 59 59 (Sharecall number). Prize stickers will be hidden in lucky patches.

CHRISTMAS CARDS - Reduced to clear - All cards are going at R2 for a pack of 5. Designs are: Choir Boys, Santa with a Train Set, Nativity Scene, Children with a Sleigh and Butterflies.
Please deposit the money into: Retinal Preservation Foundation, Standard Bank, Branch: Isando, Account number: 020133820, Branch Code: 2542 and then fax your deposit slip along with your order to 011 622 6277. Please include R5 for postage and packaging.

ANNUAL SUBSCRIPTIONS - Annual Subscriptions to National or your local branch at R40 per family are now overdue.
Please deposit into National Account: Retinal Preservation Foundation, Standard Bank, Branch: Isando, Account number: 020091427, Branch Code: 2542 and then fax your deposit slip or send a cheque. If possible a small donation to our Research Project would be appreciated.

MPUMALANGA - We are trying to establish a mini branch in this area. Contact Claudette at the National Office on 011 622 4904.

RENT A RIDE - Transport for Retinal people is always a problem, Share - a - Car (and driver) in and around Johannesburg is one solution. Contact Neil on Cell Number: 083 267 9389.

NEW VISUAL AID - The new Eschen Bach Videolupe scans books, etc into your TV. Magnification on the TV screen is from 9X to 17.5X. Consult your local Low Vision Clinic, price around R3 500.

SPINNING RECORD ATTEMPT - The Liberty / Cyclelab World Record Challenge will be held on the 16th, 17th and 18th August 2002 at the Dome in Northgate, Johannesburg. This is an attempt to break the Guinness World Record for spinning, which currently stands at 60 hours. They will be attempting to spin for 70 hours non stop. Retina South Africa will be the beneficiaries of the event. We need dozens of helpers and collectors throughout the 3 days.

Please help!!! Contact Claudette at the National Office.