PROJECTS TO FIGHT RETINAL BLINDNESS IN SOUTH AFRICA
AIMS
RETINA SOUTH AFRICA AIMS TO:
Prevent blindness by identification, intervention, management, prevention and elimination of retinal degeneration in young South Africans.
Retina South Africa thanks you for participation in this miracle - that of restoring sight to the blind.
SUMMARY:
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RP vision Macular vision
Retinitis Pigmentosa [RP], Macular Degeneration [MD] and Usher Syndrome [US] are the most common retinal degenerative [RD] diseases which affect hundreds of thousands of South Africans and millions worldwide.
Macular Degeneration causes loss of central vision, affecting all fine focus tasks such as reading, writing, driving and the recognition of faces. It has 2 major forms - one that affects very young children and a more common form that affects older patients:
- Age-Related Macular Degeneration [AMD] is the largest single cause of blindness in the elderly. The WHO has recently elevated AMD to the 3rd largest cause of blindness in the world, and the largest cause of vision loss in the developed world.
- Juvenile MD [JMD] can be diagnosed as young as 6 years of age leaving those affected with a lifetime of extremely poor vision.
- Retinitis Pigmentosa [RP] is most often diagnosed in the teenage years. Early symptoms include night blindness, poor contrast vision, very slow light to dark adaptation and a loss of peripheral [side] vision leading to tunnel vision and functional blindness.
- Usher Syndrome [US] is RP accompanied by severe or profound loss of hearing. These people have a double disability to contend with.
- International research indicates that as many as 1 in 5 people may be carriers of gene mutations for RP alone - a staggering 9 million South Africans.
- It is estimated that one in 2,000 South Africans from all racial groups may be affected by RD.
- The unemployment rate among the visually impaired far exceeds the national average and we estimate that more than two-thirds of sufferers of all races are unemployed.
- Cost of Blindness: An Australian study in 2004 estimated that the total cost of vision disorders in Australia amounted to AS $9.85 billion. This represented $252 for each Australian and over 0.6% of GDP. Other studies in Canada and Britain corroborate these findings but no similar study has ever been done in South Africa. Given our history of social imbalance we would expect these figures to be even higher in South Africa.
- Retinal degeneration affects people from all racial and socio-economic groups. The total population of South Africa is: 44.5 million [2001 census]
- Population under 35: 30.9 million. 2.7% of these have a disability and visual disability is the largest group
- Visual disability 22 %
- Hearing 14%
- Physical disability 19%
Source: www.statssa.gov.za
We are proud of the fact that our branches and national committees are generally managed by volunteers, thereby resulting in a more effective use of our donor funds. They are supported by professional and dedicated staff members, many of whom are affected by retinal degeneration.
Budget Allocation for 2007:- 30% to Research Projects
- 11% to Public Education
- 10.5% to Human Services
- 8.5% to Fund Raising
- 14% to Administration
5. CURRENT PROJECTS FOR WHICH FUNDING IS BEING SOUGHT
- IDENTIFICATION OF AFFECTED INDIVIDUALS
Work Methods:
- Public awareness campaigns, partnerships with regional, provincial and national eye care health providers, referrals from optometrists, ophthalmologists, hospitals and the like.
- Eye care facilities in the disadvantaged and rural communities are appalling. To overcome the resultant lack of referrals from the previously disadvantaged communities Retina South Africa mounts national awareness campaigns involving both the print and electronic media to bring the message of hope to these patients. Partnerships with Regional and National Government Health Departments are also actively pursued to assist in the identification process. Posters in different languages are distributed to both urban and rural clinics.
- Public awareness receives special focus during World Retina Week, the last week in September. Retina South Africa partners with the Optometric Association, the National and Provincial Departments of Health, The Ophthalmologists Association and other role players in creating awareness of retinal blindness and the risk factors that can help to minimise their effects on vision loss.
- PRE-THERAPY GENETIC PROFILING OF YOUNG PATIENTS
In order to identify which South Africans will benefit from the recent exciting gene therapy trials, a series of counselling and genetic tests must be performed. These are:
- Pre-test counselling by a qualified genetic counsellor.
- Blood taking, DNA extraction and storage at UCT
- Micro-array testing. A total of 130 genes have already been found and we need to identify the specific gene mutation in each patient. Various micro-array chips have been developed overseas to give a quick result and this sophisticated technology is not available in South Africa. The tests are therefore done in Estonia at a cost of approximately R2,500 per test. A confirmation of diagnosis test at the University of Cape Town.
- Once a result has been obtained, genetic counselling is required to deliver the results, discuss management of the condition, reproductive issues and identification of family members at risk or carrier status.
- TRAINING OF SOUTH AFRICAN RESEARCH SCIENTISTS AT THE UNIVERSITY OF CAPE TOWN
- Genetics are universally considered as the new frontier of medical science. In order to ensure that our young genetic researchers remain in South Africa we give an annual grant towards the training of post graduate students in Human Genetics. These students work on the Retina Project, collaborating with international researchers to ensure that South Africans will be included in all the exciting new gene based therapies that are now coming on stream. This project has resulted in 12 South African students receiving post graduate degrees over the last 18 years: 7 Honours, 2 Masters and 3 Doctorates in Genetics. These students are all women and mostly from previously disadvantaged communities. They are: Mrs A September, Ms S Bardien, Mrs R Goliath, Ms J Scholefield, Ms M Sasindranath, Ms S Marais, Ms F Basson, Ms P Ghignone, Ms L Roberts, Ms A Pandor and Ms F Baine. This project serves as an anchor to keep our talented scientists in South Africa.
- FUTURE THERAPY - Phase 1 human clinical
trials have shown great success.
Thanks to brave guinea pigs like Steven Howarth the
first ever Phase 1 Gene Replacement Trials for a retinal blinding condition is now showing
remarkable success. This therapy uses a modified virus to deliver a correct
copy of the missing gene and the eye miraculously picks up on the new genetic
code to produce the missing retinal protein. Similar results in animal models
have maintained the improvement for 7 years. We urgently need to find the young
South Africans who will benefit from this therapy which we hope to bring to
South Africa as
soon as possible. Other gene or drug based trails are also offering hope in
other more common retinal conditions. This
trial is only the first, we know that many more will follow. The closer we get
to a cure, the greater the demands on Retina
South Africa for funding. - HUMAN SERVICES
Work Methods:
Peer Counselling, Information, Education and Support Groups. Retina South Africa has trained peer counsellors to assist newly diagnosed patients and parents to cope with vision loss. Referral to specialist service providers also helps families and individuals in coping with the condition. Regular newsletters and emails keep patients informed of the latest advances in research and innovative assistive technology. Support groups allow patients to discuss common problems and alleviate the depression and social isolation that accompanies vision loss. Information booklets are distributed free of charge to Eye Specialists, Optometrists and members of Retina South Africa. A share call number allows easy access for advice to all South Africans.
- Retina South Africa is a registered non-profit organisation
- NPO Number 003-184
- National Office: No 2 - 34th Street, Malvern, Johannesburg
- PO Box 40432, Cleveland, 2022, Johannesburg, South Africa
- Telephone: +27 11 622 4904
- Fax: +27 11 622 6277
- Public help line share call number: 0860 59 59 59
- Email: national@rpsa.org.za
Executive Committee:
- National Chairman: Mr James Cape
- National Treasurer: Ms Marian Nickless
- National Secretary: Mrs Claudette Medefindt
- Chief Executive Officer: Mr Ebrahim Patel
- National Honorary President: Mr Bruce Fordyce
Scientific and Medical Advisory Board [abridged]:
- Professor Rajkumar Ramesar
- Professor Linda Visser
- Professor Jacquie Greenberg
- Professor Joe Hollyfield [USA]
- Professor Gerald Chader [USA]
- Professor David Meyer
Board of Trustees:
- Dr William Rowland - President World Blind Union
- Mr I Forbes, Mr J Mathee, Mr E Matya
Professor Raj Ramesar, UCT, principal investigator
of the Retina Project pictured with Professor Joe Hollyfield, USA,
Chairman of Retina International Scientific and Medical Advisory Board.
Retina South Africa is the only non-profit patient organisation dedicated to fighting blindness in South Africa. It was established in 1979 and is largely administered by affected individuals and their families. Branches are situated in Cape Town, Durban, Johannesburg, Port Elizabeth and Pretoria. The National Office is situated in Johannesburg. Retina South Africa is a founder member of Retina International, headquartered in Switzerland and is also a member of the AMD Alliance International based in Canada.
Retina South Africa receives funding from both public and corporate sponsors but also aggressively pursues special events to raise the much needed finances to ensure continuity of our projects and our cause. The establishment of long-term meaningful relationships with corporate sponsors will help ensure that new and emerging international treatments will be available to South Africans losing their vision to retinal degeneration. Thank you for your support in making their vision of a sighted future a reality.
