NATIONAL AGM IN DURBAN 8TH AUGUST 2003
National
and Branch office bearers at the National AGM in Durban.
The Annual General Meeting
of Retina South Africa was hosted this year by the Kwa Zulu Natal Coastal
Branch. The meeting was held in
conjunction with the quarterly National Management Committee Meeting. The National office bearers elected are:
Gordon Cousins (Chairman), James Cape (Vice-Chairman), Jean Bowler (Treasurer) and
Claudette Medefindt (National Secretary).
The meeting welcomed our new Chief Executive Officer, Mr Ebrahim Patel
to his first AGM. Thanks to the Natal
Society for the Blind for the use of their premises. Special thanks to the Royal Hotel and Holiday Inn Marine Parade
for sponsored hotel accommodation for national delegates.
SMAB NEWS
The Scientific and Medical Advisory Board of Retina
South Africa met in Johannesburg on the 27th June 2003. Outgoing
chairman of SMAB, Professor Trevor Carmichael was thanked for his years of
dedicated service to Fighting Retinal Blindness. The new chairman is Professor Raj Ramesar head of Human Genetics
at the University of Cape Town.
RETINA INTERNATIONAL CONGRESS 2004
The quarterly NMC meeting agreed to send a minimum of 3 delegates to the
next Retina International Congress in Holland in July 2004. They are National Chairman – Gordon Cousins,
National Secretary – Claudette Medefindt and Chief Executive Officer – Ebrahim
Patel.
In addition funding will be sought for delegates to the Youth Congress
being held for the first time.
Are you: -
·
Under 35
years old
·
Prepared
to share the knowledge and ideas gained from the conference to motivate young
people with Retinal Degeneration to make a difference.
If so, apply in writing to your local branch or to Retina South Africa
National Office. Motivate why YOU should be chosen to represent South Africa’s
RD Youth.
WORLD RETINA WEEK NEWS
Retina South Africa will be joining with 50 countries world wide to
publicise Retinal Degeneration during World Retina Week 22nd to 29th
September 2003.
An exciting new media campaign has been devised by Grey Worldwide and
posters and pamphlets will be distributed by the South African Optometric
Association and Retina South Africa branches.
Posters will be displayed in Optometric Practices, Clinics, Libraries,
Schools, etc. If you can display a
poster in your area please contact the National Office. Members of the South African Optometric
Society will be offering free Retinal Screening during Eye Care Awareness Week
from the 8th to 15th October 2003. Tests are by appointment only.
Other Activities during World Retina Week are: -
CAPE OF GOOD HOPE BRANCH:
·
Awareness
stall at the Crafters fair at the Waterfront 22nd to 28th
September.
·
Street
Collection Saturday 27th
Call Roy Abbott on 021 592 6099
EAST CAPE BRANCH:
·
Workshop
and Collection in Plettenberg Bay – 30th September
·
Youth
Group’s Band Jam at The Kraal University of Port Elizabeth – 19th
September 2003
Call Gail Cillie on 041 373 3896
CAPE COASTAL & COUNTRY:
·
Collection
in Hermanus – 21st September
·
Free
Retinal Screening during World Retina Week
Call Pat Woodland on 028 312 2229
FREE STATE:
·
Sakkie for
Sight Dance – 27th September
Call Willie Reichert on 051 436 1007
NORTH GAUTENG:
·
Swing for Sight
Golf Day – 26th September
Call Poppie Strydom on 012 546 0373
KWA ZULU NATAL – INLAND BRANCH
Good News!!! The re-birth of this
once dynamic branch will happen during World Retina Week. Contact Gordon or
Melaney Oldfield on 033 347 3986
To place
tins or posters in your areas contact: -
Gauteng – Dianne Hasapis: 011 622 4904
Kwa Zulu Natal John
Foster: 031 312 6212
Polokwane Stefan Steyn: 015 297 0820
Natal Inland Gordon or Melaney Oldfield: 033 347 3986
Contact your local branch or the National
Office: 011 622 4904
TECHNOLOGY NEWS
Technology continues to improve
access to communication for Low Vision patients. Some of the latest on the
market: -
·
A new CCTV reader marketed by Gormel. This Samsung
Video presenter can be used with a TV screen or P.C. monitor. It weighs 3.5km and is thus highly
portable. For more information contact
Gordon or Melaney at 033 347 3986 or e-mail: gormel@chillibyte.com
Affordable magnification and speech
program for PC’s from Nationwide Computer Literacy: -
§
Lookout Screen Reader Software – reads documents and
spreadsheets. Cost around R2 500.
§
Magnus – Screen Reader Magnifier programme with split screen option.
Magnification up to 16X, cost around R2500.
§
Dual Combined magnification and screen reading
software. Cost around R4000.
§
Complete reading system – to be used with any document
scanner. This software converts scanned
image to voice and costs around R6000. This programme is available free to all
educational institutions.
For further information &
products visit: www.nationwide.co.za
and click on “products”. Nationwide Computer Literacy will donate R500 from the
sale of each of these products to Retina South Africa. Contact Dirk Lamprecht on 082 708 2051 or
e-mail dirk@nationwide.co.za. THANKS DIRK!
Neville
Clarence Technologies recently held an exhibition to display the latest
technology for Low Vision patients. Some of the products worth noting are: -
·
The Tieman
Traveller – A compact, light weight (800gm) portable electronic text magnifier
with built in colour monitor. Brilliant
but expensive – around R25 000. Magnification 4.6 X to 16X. www.tieman.nl
·
The enhanced vision max mono or colour scanner –
lightweight and completely portable document scanner with mouse camera. Can be connected to TV, PC or Laptop
Computer. Unit costs around R5 500.
Converter and software for PC & Laptop are add on extras. Magnification on
a 37cm TV is 12X to 20X. www.enhancedvision.com
·
Baum Poet Compact – This is a stand alone document
scanner with voice output. No computers
– no attachments, but a hefty price tag of around R45 000. www.baum.de
·
The Nokia 9210 cell phone communicator – This is a
communication breakthrough – for SMS messages, e-mail and standard communicator
functions with voice output. The phone costs
around R4000 and the software also around R4000.
HOT NEWS!!! Nokia 3650 & 7650 and some Siemens and Samsung Cell phones can
support a voice programme. The software for these phones costs around
R2000. Contact Kingsley @ 012 346 3464.
GOOD NEWS!!! Neville Clarence Technologies will pay a commission to Retina
South Africa on all sales to our members.
Please inform them of your membership on purchase and keep us informed.
e-mail: lance@nctec.co.za.
FOR SALE: TV(i) Magnifier (As New). Mouse
Scanner to TV. Magnification.
X16 on 37cm TV. Cost R4000 (R1000 saving). Contact Retina South Africa East
Cape Branch on 041 373 3896
FOR FREE: A large “RAT” cursor programme from
Megan, e-mail: ratcursors@yahoo.ca
FREE HEALTH SERVICES FOR THE DISABLED
The National Minister of Health, Dr
Manto Tshabalala-Msimang recently announced that people with permanent, moderate
or severe disabilities (including severe vision loss) will receive:
·
All in/out patient hospital services at State
Hospitals free of charge
·
Specialist medical interventions for prevention, cure,
correction or rehabilitation of a disability subject to motivation from
treating specialist and approval by a special committee.
·
All assistive devices for the prevention of
complications, such as hearing aids, spectacles and intra-ocular lenses.
The Provincial Departments of Health
will be responsible for replacing devices and assisting newly disabled people.
TAX DEDUCTIONS FOR LOW VISION PATIENTS by Duncan
McAllister
The South African Revenue Services
accepts the World Health Organisation criteria for determining visual
impairment.
·
A “blind” category is a Visual acuity of less than
3/60 or corresponding visual field loss in the best eye with best possible
correction.
·
A low vision classification is a visual acuity of less
than 6/18 in the better eye with best possible correction.
A letter
confirming this classification must be made by a Department of Health and
signed by 2 trained health professionals.
A “Blind”
taxpayer can claim all medical expenses in excess of R500. Other costs could also be claimed e.g.
Spectacles, magnifiers, special equipment, costs of keeping your guide dog,
etc.
School
fees of “Blind” children sent to special schools may also be claimed. All expenses claimed must be in consequence
of the physical disability.
For Low
Vision patients deductions are limited to expenditure in excess of 5% of your
taxable income. These deductions are
all covered under Section 18 of the Income Tax Act.
Other deductions may be claimed under Section 11.
(e), Wear and Tear allowance. This is
only relevant where equipment is used for your business or trade. Consult a qualified tax consultant to ensure
that you are claiming what is legally due to you.
RESEARCH NEWS
·
First Drug
Therapy for RP enters human safety trials.
The Food & Drug Administration (FDA) of America has given approval
for Phase Ι trials of Encapsulated Cell Technology (ECT). ECT is a very small capsule containing
genetically modified Retinal Pigment Epithelial cells (RPE) which over-produce
a growth factor – C N T F. Neurotech a
Biotech company has proved that this ECT therapy slows the rate of vision loss
in animal models. The implanted E C T
evades the Blood / Retina barrier that prevents conventional drug delivery to
the Retina.
·
Alcon
Trials for Anecortave Acetate Therapy for early stage “wet” Age Related Macular
Degeneration (AMD) enter important Stage III trials.
This multi centre trial will probably not be
available to South African patients - despite efforts by Retina South
Africa. We are working with Alcon
International to ensure South African AMD patients have access to this therapy
as soon as possible.
·
The
implantable Miniature Telescope (IMT) goes to phase ΙΙ trials. The IMT is a pea sized magnifier which is implanted in an intra-ocular
device. This device is giving improved
vision to people affected by Macular Degeneration and Visioncare hope the
device will be freely available after the current trial ends in two years time.
·
Acne
Medication tested for Stargardt Dystrophy
Researchers in America have found that Accutane – a drug
used to treat severe acne, slows the accumulation of toxic lipofuscin in mice
models of Stargardt Dystrophy. The build up of lipofuscin causes the death of
Retinal Pigment Epithelial Cells (RPE) which in turn leads to the destruction
of Photoreceptor cells. Accutane is however a powerful drug with the
potential for dangerous side effects such as birth defects, liver toxicity and
severe depression. Patients with
advanced Stargardt are unlikely to benefit from self medication with Accutane.
UNDERSTANDING THE SCIENCE (Part 2)
In our previous Newsletter we explained the structure of the eye. In part two we look more closely at the
Retina, which lies at the back of the eye and acts like a film in a camera,
changing light images into nerve messages sent to the brain.
The Retina is the most complex part of the eye and consists of many
specialised layers. Some of these are:
Photoreceptors: These are the
minute cells that react to light. We
have 2 kinds of photoreceptor cells: -
Cones: - Which are mainly concentrated in the central (macular) part of
the Retina. They are responsible for
central fine focus vision and colour vision.
Rods: These are found in the peripheral part of the Retina and are
responsible for side vision and night vision.
There are more rods cells than cone cells in the Retina.
Retinal Pigment Epithelial Cells – RPE cells are the
“nurse” layer of cells that underly the Photoreceptors. The RPE gets rid of the waste products from
the photoreceptors and also provides nutrients to the photoreceptors. The RPE cells screen the Retina from all
foreign substances – the so called Blood / Retina barrier
BLOOD CLINICS
Four very successful blood clinics were held between
May and the end of August in Durban, Pretoria and Johannesburg. 154 Bloods were taken and these RD patients
and their family members have now taken that first crucial step on the road
towards therapy. Have you?
Right to Sight – cataract eradication campaign.
The Bureau for the Prevention of Blindness has
established this program and cataract operations are free of charge to all
South Africans earning less than R2000 per month. For more information, contact Marinda van Niekerk at 012 346
1171.
Lutein from National Office
Lutein is now becoming freely available and the National
Office will be phasing out the supply of Lutein to members. “Eyes for Life” contains 10mg Lutein with
Zeaxanthin, Billberry and Vitamin C.
Get your local health shop to order from Delphinius Distributions, fax
number 011 792 2671. Retail cost around R100 for 60 capsules. Social pensioners
and Social Grant holders can apply to the distributor for a special discount
price.
BRANCH NEWS
KWA ZULU NATAL
Professor Raj Ramesar head of our Gene Tracking Project and newly
elected chairman of SMAB gave a talk to members of the Kwa-Kulu Natal Coastal
Branch on Friday 22nd August.
This lecture was advertised extensively by the local media. Congratulations to John Foster the event
co-ordinator.
NORTH GAUTENG - SAGE-LIFE ART COMPETITION
The North Gauteng Branch held the prize giving of
their Art Competition “See me – Feel Me” on Friday 22nd August. The competition was once again generously
sponsored by SAGE Life and the sale of art work raised R8000 for Fighting
Blindness. Congratulations to Poppie
Strydom and her dedicated team.
EAST CAPE
The Port Elizabeth branch of Retina South Africa will
be moving to new premises, they will be at, Suite 5, Eurohouse, 45 Newton
Street, Newton Park.
PLEASE SUPPORT WORLD RETINA WEEK
22ND TO 29TH SEPTEMBER