OBITUARIES

EDITH ALLPASS died tragically in January. Edith suffered a stroke after 2 violent attacks by armed robbers within a fortnight. Edith was secretary to the Natal Inland Branch and a tireless worker for the Branch since its inception.

FLURIS STRYDOM died in November. He was immediate past-president of the North Gauteng Branch, his enthusiasm will be sorely missed.

LOUIS REICHERT. Deceased in December. Son of Willie and Elsabe Reichert who jointly run the Free State Branch.

BRETT JOHNSON. 16 years old - was killed in a hit and run accident in April. Sue Johnson, his mother, is a member of the Gauteng Branch Committee.

MRS ADELAIDE CLAYTON. Mrs Clayton named the Foundation as one of the beneficiaries in her will. A sizeable bequest will be coming to the Research Fund because of her vision.

Our condolences to all the families involved. The pain of losing your vision pales in comparison to the tragic death of a loved one. RIP

CHAIRMANS REPORT by National Chairman, Gordon Cousins Research The sad news is that our Genetics Research team at UCT were unsuccessful in their re-application for funding from the Foundation Fighting Blindness (USA). This means that we have also lost the matched grant funding from Thrip - total loss of around R500 000. This puts extra pressure on our own fund raising projects for research. Despite this setback, the project continues to make progress. Our Scientific and Medical Advisory Board has approved a follow-up form to obtain more details of patient's retinal condition from eye specialists. We need accurate patient details to extend and improve our database in anticipation of clinical trials. Members are earnestly encouraged to donate blood and have their eye specialist complete the Diagnoses Form - available from the National Office.

Public Awareness We are now totally focussing our National Public Awareness Campaign around World Retina Day - which falls on Saturday 30 September this year. We have successfully linked the Blue Ribbon concept to this PR campaign which we will be enlarging and extending this year. The opportunity for participation is a challenge to each member. We encourage all members to sell blue ribbons to friends and colleagues around this time.

Human Services The Employment Creation Project continues in the Gauteng area. Support groups to assist members have been established in most branches. Members are encouraged to contact their nearest branch to join or initiate a support group in their area.

Administration The Foundation is administered by the National Management Committee which meets 3 times annually. This Committee comprises 2 delegates from each of the 8 branches plus the National Chairman, Secretary and Treasurer. At both branch and national level recruitment of volunteers remains a problem. We need to recognise that paid staff drain our precious financial resources.

Fund Raising The branches are to be commended on their resourceful and energetic fund raising activities. The allocation (80% of net income) by the branches to the Research Fund for the forthcoming financial year is a tremendous total of R431 000. This has consolidated our Research Fund and allows us to start investigating new initiatives for research funding.

Conclusion I would like to thank the Branch and National Executive for their excellent achievements during the past year. We look forward to an exciting year of continued growth and success in this new millennium. We know that we are building a solid foundation in fund raising for research projects. We look forward with expectation to an increase of treatment trials of new therapies. The involvement of multinational drug companies in these new therapies is very encouraging. We know in this decade, as we move research from the laboratory bench to treatments, we will see the beginning of the end of retinal degeneration.

CONGRESS UPDATE The Bi-ennial International Congress being held in Toronto, Canada in July is being sponsored by CIBA Vision. A strong delegation from South Africa includes: Scientific Delegates - Prof. Trevor Carmichael, Ophthalmology Wits and Prof. Raj Ramesar, Human Genetics, UCT. Official delegates to the General Assembly are: Gordon Cousins, National Chairman and Claudette Medefindt, National Secretary. They have both been nominated to the International Executive Committee. National Vice-Chairman, Gail Cillie of Port Elizabeth has kindly been sponsored by Italtile. James Cape, Chairman Gauteng, is the other official delegate. John Foster of Durban and Rob Kershaw of Johannesburg will also be attending.

The two South African delegates to ARVO, the largest International Retinal and Vitreous Congress being held in Fort Lauderdale, USA in May are Prof. Trevor Carmichael, Chairman, South African Scientific and Medical Advisory Board and Dr Ari Ziskind from Tygerberg. Dr Ziskind has just been elected onto SMAB.

Retinal Degeneration received excellent coverage at the annual congress of Southern African Ophthalmologists. The Congress was held in March in Swaziland. Both Professors Raj Ramesar and Jacquie Greenberg of UCT gave papers on the retinal gene-tracking project. Claudette Medefindt gave 3 papers to the simultaneous Congress of Ophthalmic Assistants. An information table was manned to distribute posters, pamphlets and booklets on various aspects of retinal degeneration.

The American Foundation Fighting Blindness will host their annual congress in August in Orlando. For more information visit their website: www.blindness.org

RESEARCH SNIPPETS

1. Visudyne, the photo dynamic substance used to treat "Wet" Age-related Macular Degeneration, was approved for use by the America Food and Drug Administration in April. Contact your eye specialist for further details.
2. Dr William Doubell of New York recently published preliminary findings of one blind patient using a visual prosthesis implanted directly into his brain. The patient was able to see 2 inch high letters in a small field of vision from a distance of five feet. Unlike the retinal implant under development, which requires an intact retinal neuron system, this new device bypasses the retina completely. Neither system will be commercially available for some years yet.
3. The blind singer, Stevie Wonder, visited one of the research labs investigating the retinal implant in December. The ensuing public awareness on TV and in the press highlighted the progress being made in retinal research.
4. Various studies are under way to investigate the treatment of "Dry" AMD with laser. The Universities of Pennsylvania and Pittsburgh (USA) have undertaken 2 five year studies - The Complication of AMD Prevention Trial (CAPT) and the Prophylactic Treatment of AMD (PTAMD). Both studies will investigate the breakdown of drusen deposits by low intensity laser.
5. The Retina Centre of St Louis recently published the finding of treatment of "Dry" AMD by infrared laser.
6. Risk factors for AMD include diet, smoking, high levels of ultra violet light, artificial sweeteners and plastic food wrapping and containers.
7. A newly formulated carotenoid and vitamin supplement for Macular Degeneration is available from Health and Performance Products. The product, Eyes RX contains Lutein, Zeaxanthin, Beta carotene, vitamins, minerals and amino acid co-factors. Ask your eye specialist for further details.
8. Time Magazine (November 1999) highlights the risks associated with excimer laser surgery to correct near sightedness, far sightedness and astigmatism. LASIK, laser assisted in situ keratomileusis, is generally safe but some patients report problems with diminished contrast and poor night vision (already major problems for people with RD - Ed). Most LASIK patients have trouble with glare and halos for a short time after surgery. People with large pupils or severe corrections report ongoing problems with glare. (It would appear that LASIK surgery has triggered AMD in at least one reported case - Ed))
9. An article was recently published on the safety of long term use of Vitamin A supplementation. The study followed 146 patients who took 15 000 IU Vitamin A Palmitate daily from 6 - 12 years. None of these patients have experienced any liver problems. Vitamin A has been shown to slow the retinal degeneration in Retinitis Pigmentosa and Usher Syndrome patients. Vitamin A must only be taken under the supervision of a doctor. Contact Claudette at National Office for more details.
10. Diabetics with Retinitis Pigmentosa - please contact Prof. Arden at
11. Genetic update. To date 118 genetically specific retinal conditions have been mapped but only 54 genes identified. Some new findings are:
12. Cone Rod Dystrophy, Homeobox Gene CRX on Chromosome 19q. This brings the total number of genes causing CRD to 8.
13. Autosomal Recessive RP (RP12), a severe form of RP, has been mapped to Chromosome 1q. This gene codes for a protein, CRB and is thought to involve cell to cell interaction or cell polarity.