RETINA
NEWS
FEBRUARY
2001
RETINAL PRESERVATION FOUNDATION OF SOUTH AFRICA
PO Box 40432
● Cleveland 2022 ●
Tel (011) 622-4904 ● Fax (011) 622- 6277
e-mail: national@rpsa.org.za Home Page: www.rpsa.org.za
(Sponsored by Intekom)
WORLD
RETINA DAY: 30TH SEPTEMBER 2000
Wow!
What a day, what a week, what a month! The
Retinal Preservation Foundation, all the Branches, the Media, the Corporate
Sector, Volunteers RP Foundation Members and their Families pulled out all the
stops to create awareness of Retinal conditions in the weeks surrounding World
Retina Day 2000.
THREE CHEERS AND GRATEFUL THANKS TO THE MEDIA! TELEVISION
Our
30 second TV Advert was featured on M Net, E TV and SABC TV. M Net sponsored over R300 000 worth of airtime. E TV and SABC TV both gave us excellent
coverage as well. We cannot put a Rand
value on the total airtime we received.
RADIO Our radio ad was featured on Radio Jacaranda 94.2 and spokesman from National and the branches were interviews on dozens of National and Regional Radio Station.
PRESS Newspapers
that featured articles on Retinal Degeneration included the Argus, Algoa Sun,
Beeld, Benoni City Times, Bedfordview & Edenvale News, The Citizen, EP
Herald, Fort Beaufort, Advocate, Hermanus News, News Knysna and Plett, Herald
Midrand, Port Alfred Talk of the Town, PE Express, Pretoria News, Sunday
Tribune, Weekend Argus, Vroue-keur, Volksblad and the Weekend Post (PE)
MAGAZINES & NEWSLETTERS We got excellent coverage in
Readers
Digest,
Cosmopolitan, Essentials, Huisgenoot, Womens Value, Hospera Nursing Today,
Mens
Health, Light Years, Nursing Update and Vision.
AND WE HAVE TO THANK THE OPTOMETRISTS AND EYE CARE SPECIALIST WHO GAVE THEIR FULL SUPPORT AS WELL!
Spec-Savers,
Clear Vision and Foresight Optometrists gave FREE Retinal Screening and also
sold Blue Ribbons. ECW Express
(Airfreight Africa), DHL Worldwide Express and XPS sponsored the shipping of
Posters, Pamphlets, Ribbons and collection tins. GRATEFUL THANKS TO UNILEVER FOR THE DONATION TOWARDS THE COST OF
THE CAMPAIGN.
BRANCHES AND THEIR DEDICATED VOLUNTEERS, MEMBERS AND
THEIR FAMILIES AS WELL AS THE CORPORATE SECTOR AND SCHOOLS DESERVE A PAT ON THE
BACK AS WELL!
The
Visionary Tour conducted by the East Cape Branch visited 9 towns in 4 days to
bring education and spread the word in this vast region. Gail Cillie, Vice National Cahirman was part
of the superb visionary tour team comprising of Professor Jacqui Greenberg
(Co-Principal Investigator of our gene tracking project at UCT) and Ann Metcalf
(Low Vision Rehabilitation Specialist and Chairman of our North Gauteng Branch)
Towns visited were: Graaf-Reinet , Somerset East, Cradock, East London, Port
Alfred, Plettenberg Bay, Knysna, George, and Port Elizabeth. More than 260
People including Ophthalmologists, Optometrist, Teachers, Nurses, Doctors, Librarians, Patients and Family Members, attended these workshops. Our most grateful thanks to THE PORT ELIZABETH EYE AND LASER INSTITUTE who sponsored the costs of the most successful awareness outreach. Thank you Gail, Ann and Jacqui for paving the way for future Outreach Programmes.
Both Blue Trains once again sported GIANT BLUE RIBBONS to launch the weeks
activities. Literature on Retinal
degeneration was placed on both the Blue Train and Rovos Rail.
SANLAM and
DIE JONG BURGER sponsored
an art competition in the Eastern Cape in which 16 schools participated. Thank you SANLAM & DIE JONG BURGER for
sharing in OUR PRECIOUS VISION.
Silver collections were
held in numerous centres and the Cape of Good Hopes collection on World Retina
Day raised over R10 000.
Carmen Summersgill motivated
Pretoria Girls High to hold a civvies day for Blue Ribbons and the school
raised a Grand Total of R 4000 for RP Research!
Jean
Campbell mounted a
beautiful Blue Ribbon display at the International Quilters Fair in
Johannesburg and Blue Ribbon sales at this prestigious fair amounted to R 2000.
Displays of Low
Vision Equipment enhanced by Posters, Pamphlets, RP Simulators and Blue Ribbons
were set up in Libraries, Shopping Malls and Community Centres throughout the
country. Schools, Clinics, Chemists,
Hospitals and Buses all sported posters to celebrate the day with us.
A Celebrity Shopping Spree took
place at Pick n Pay in Port Elizabeth.
Local Celebrities including Miss PE, Optometrists, Members of the Press,
Radio Stations and Pick n Pay as well as Sports Celebs were given glasses
simulating various retinal
conditions and challenged to shop for
specific items. Local shoppers &
staff got involved and had a great time helping the Celebs fill their trolleys. THANKS PICK N PAY (WALMER PE) & ALL THE
CELEBRITIES! WHAT A WONDERFUL CELEBRATION IT TURNED OUT TO BE!
PLANS FOR WORLD RETINA WEEK 2001 ARE UNDERWAY AND IT PROMISES TO BE EVERY BIT
AS EXCITING AND FRUITFUL AS 2000.
FAREWELL
TO ANN
Ann Metcalf, Chairman North Gauteng Branch
has relocated to Vienna,
Austria.
Her husband Phil has taken up a post with an International Atomic
Agency.
Ann will be sorely missed, not only as a dedicated RP Chairman,
But as one of the most experienced Low
Vision Therapists in the Country.
Sarien van Rooyen who brings with her a
wealth of expertise and experience in Law and Civil Service will be taking over
as Chairman in Pretoria. Good luck
Sarien.
Talking about the last NMC which was held in Bloemfontein
It was a major success. The Bloemies pulled out all the stops to
ensure that it was not only very productive but extremely enjoyable as
well. The hospitality was great, the
food was excellent and the organisation was superb. THANKS BLOEMIES IT WAS GREAT!
NEW LOOK FOR RETINA NEWS
The new format and style of Retina News is
thanks to the fresh approach of Alta van der Merwe. Alta joined the National Office as special events co-ordinator
and co-editer for Retina News. After 20
years I happily hand her the mouse. I
will continue to edit the science news.
Please support Alta by sending her articles, news and photographs. Claudette
Medefindt : National Secretary
SUBS:
PLEASE
NOTE: Annual RP
Foundation Subs of R30 are now due.
Please forward to your nearest branch or the
National Office. We need your support
RETINA E-MAIL OR PHONE
PALS: Are you interested in contacting people with
similar interests or eye conditions?
The Foundation will put like minded people in touch with one another eg:
●
Computer Boffins ● Parents of RP, Stargardt and Ushers Children
●
Persons with Macular Degeneration ● RP Youth etc
MAIL,
FAX OR E-MAIL YOUR DETAILS & SPECIAL INTERESTS TO:
Science Flashes
VISION RESTORED IN LCA MOUSE
MODEL: Dr Palczewski
from Washington (USA) and Dr Jacobson of Pennsylvania restored visual function in
a mouse model of Leber Congenital Amaurousis a severed early onset of Retinal
Degeneration. The gene mutation causing
LCA-RPE 63 disrupts the conversion of Vitamin A to its derivative in the
Retinal Pigment Epithelium (RPE). This
chemical combines with compunds found in the Rod Cells to produce Rhodopsin,
the substance that reacts to light, the first step in the visual cycle. The researches administered the Vitamin A
derivative (9-cis-retinal) orally to mice which then experienced a profound
restoration of vision
GENE THERAPY RESTORES RETINAL FUNCTION IN MOUSE MODEL:
Dr Robin Ali & Dr Shomi Bhattacharya
from the Institue of Ophthalmology in LONDON successfully restored retinal
function in a mouse model with a mutation in the Peripherin/rds gene. Peripherin is a component of photoreceptor
cells. The defective gene was replaced
by gene replacement therapy and their delivery was verified by Electron
microscopy of the structure of the photorecptor cells.
USER SYNDROME 1 C GENE IDENTIFIED: Dr Andreas Gal of Hamburg and Dr Bronya Keats of New Orleans
(USA) recently identified the gene affecting Louisiana disease causing moderate
to profound hearing loss accompanied by Retinitis Pigmentosa. The type 1 c encodes a protein named
Harmonin by the researches. This
protein is believed to help a variety of other proteins by assisting in a
number of different cellular processes.
Further work will determine the various ways disease-causing mutations
in the gene encoding harmonin interfere with the normal function of cells in
the retina and in the ear. This will be
invaluable in developing treatments for slowing or preventing the disease.
BARDET-BIEDL GENE
DISCOVERED: Drs
Stone, Lewis & Lupski have linked a gene encoding for a protein
chaperonin to a large group of BBS patients in Newfoundland. BBS is a rare disorder that affects the
formation and function of many parts of the body including the retina.
Symptoms include polydactyl (extra fingers and toes) obesity, learning
disabilities, kidney problems and a retinal condition similar to RP.
This same gene was recently found in a
similar disease call Mc Kusick-Kaufman Syndrome (MKKS), This condition shares
many symptoms of BBS but with no Retinal Degeneration. The researchers believe that mutations in different
parts of the gene can produce two very different yet related conditins. BBS
and MKKS. Chaperonin is believed to
help many other proteins function properly in the cells of the body. Comprehensive work in the area of genetics
will eventually make earlier diagnosis possible, and possibly result in
development of a method of early intervention to prevent the effects of this
disease.
SPORTS EVENTS
The Pick n Pay Family Run For Sight was
held on Oct 1st 2000 with nearly 800 athletes sporting Blue Ribbons
of Hope taking to the streets of Benoni and Boksburg. Our grateful thanks to Oakfields, Farrarmere and Towers Pick n
Pay Family Sotres for their support.
R15 000 was raised for research.
Thanks also to Benoni Harriers
our organising club for their contribution towards this very successful event.
THE LIBERTY/MESSER FEDGAS
RIDE FOR SIGHT held
in Boksburg on Sun 4 Feb 2001 raised R150 000 for RP Research with 4500
cyclists participating and 250 volunteers pitching in.OUR GRATEFUL THANKS TO
ALL
FOR A JOB WELL DONE!
WHEELS FOR PE THANKS TO
DELTA
Gail Cillie and Denis van Huysteen (Manager
Corporate Communications) with the Astra Classic loaned to the PE ranch by
Delta Motor Corporation for utilisation and provision of services.
A National congress on Retinal Degeneration
will be held in September 2001 in Johannesburg. Dr Gerald Chader, Chief Scientific Officer of the American
Foundation Fighting Blindness and Past Chairman of the American National Eye Institute
will be the keynote speaker. Besides
talks by him and local experts in the field of
Ophthalmology and Genetics you will be
afforded the opportunity of attending small specialised workshops that affect
you directly.
Eg: Retinitis Pigmentos, Stargardt Disease,
Age Related Macular Degeneration, Youth Issues, Mobility, Information
Technology, Parenting, Maintaining an independent lifestyle etc. Conference costs will be kept to a minimum
and low costs will be kept to a minimum and low cost accommodation is being
sought.
Reply now for more details:
MAIL TO: Retina
2001 Box 40432 Cleveland 2022 E-Mail
: national@rpsa.org.za ●
Fax: (011) 622-6277 Phone
(Local call costs) 086 059 5959
