DIS-CHEM RIDE FOR SIGHT
The 23rd Ride for Sight was held in Boksburg on Sunday February 13th and Dis-Chem were once again the naming sponsors. The City of Ekurhuleni hosted the event for the first time and their inclusion made a huge impact on the event. Although the participants were slightly down on 2010, the proceeds of the event remained the same - around R300 000. A slight increase in entry fees and more sponsored services helped us to ensure that this event remains the largest contributor to the UCT project to ensure South Africans are included in imminent therapy for Retinal blindness.
Congratulations to our two main winners, Christoff van Heerden [for the 2nd time] and Cherise Taylor [3rd win]. All the top South African cyclists participated and it was great to see more development teams participating. Thank you to the cyclists who donated their winnings back to the research project. Thanks also to those who participated in the special donation draw. The R13, 700 raised is being matched by the Dis-Chem Foundation, so a great total of an extra R27,000 will boost the contribution to the research fund. Look out for the race film on SuperSport.
Retina South Africa would like to thank all the individuals, companies and organisations for their dedicated service, sponsorship and support of the Ride for Sight:
Dis-Chem Pharmacies, Dis-Chem Foundation, the City of Ekurhuleni, Springs Wheelers Cycling Club, Alberton Amateur Radio Club, Red Cross, Gauteng Department of Health, Biogen, Vita-thion, Cellfood, TransAct, Piz Buin, Bausch & Lomb, Marcus Rohrer Spirulina, Cycle Events, RaceTec, Clover, Bar1 (Nestlé), Tour de Frans, Mongoose Cycles, Venter Trailers, Bell, MTN, Avis, Sealy Posturepedic, Lotto, Unitrans, Grafton Everest, Mantis Security, Indaba Hotel, Wilderness Safaris, Erwat, Visual Feast, Birchwood Hotel, Kenwood, Emperors Palace, Cathedral Peak Hotel, WD Ice, Brand Activation, Beachcomber, Designer Group, Matopi Lodge, Johnson & Johnson, Michelle's Travel, Liquor City, Pick n Pay Towers, Wits Physio students, marshals from Lions, Rotary and Rotoract, Water Table sponsors - Voith Turbo, Nestlé, Bravo Group, Helivac, and Farrarmere Primary School, traffic officials from Ekurhuleni and Midvaal; but especially the cyclists, for without their support the race would not happen.
Dis-Chem was presented with the Chairman's award at the report back meeting held on Saturday 2nd April. James Cape is pictured presenting the award to Derek Mc Ewan from Dis-Chem.
Derek McEwan from Dis-Chem receiving the Chairman's
award on behalf of Dis-Chem Pharmacies
Mike McBeath, Chairman of Springs Wheelers receiving
the Chairman's award for 22 years' service at the RFS
Christoff van Heerden, winner of the Ernest Hunt Trophy
on the 116km event for the 2nd year running
Cherise Taylor, winner of the Ladies Trophy on the
116km event for the 3rd time
Gavin Kilpatrick, Paralympic Bronze Medallist with his
partner Clint Cosgave, winners of the 116km Disabled Tandem event
TEAM EFFORT
James Cape Chairman RSA paid tribute to the sponsors, partners and volunteers at the report back meeting. He
stressed that the success of the ride was a team effort and that 400 volunteers helped on the day. Pictured here are
representatives from Dis-Chem, City of Ekurhuleni, Alberton Amateur Radio Club, Springs Wheelers, Retina SA and
stalwart volunteers.
The Lions Club of Bedfordview won the trophy for the best marshal team. James Cape is seen presenting the trophy
to them at a Club meeting. They also kindly donated their marshalling fee back to the research project. The trophy
for the best Waterpoint went to Nestlé.
OSSA Congress
The 41st National Congress of the Ophthalmological Society of South Africa took place from the 24th to the 27th
March in Port Elizabeth. The Congress organizers once again sponsored our congress fees and our awareness table.
Retina South Africa presented 4 presentations and we were honoured with a 10 minute slot on the main congress
program. Presenters were Claudette Medefindt, National Director for Science, Gail Cillie East Cape Chair and Anton
van Rooyen, East Cape Vice Chair. Togo, Gail’s Guide dog was the undoubted star of the show and brought dozens
more attendees to our table.
The gala dinner was an exciting event and Gail was presented with the OSSA Citizen of the Year award. To our
delighted surprise the OSSA Committee then presented us with a R30 000 donation. GENOP very generously added
a further R20 000 to kick start the "Light in the Darkness" project to identify the genetic mutations in young Black
patients affected by Retinal degeneration. Ophthalmologists in both State and private practice have pledged their
support.
Professor Hassan Mortada, Egypt, Dr Kgaogelo Legodi, Dr Rizwana Amod and
Claudette Medefindt at the Novartis Retina Workshop at the OSSA Congress
Dr Deon Doubell, incoming President of Ossa with Gail Cillie, recipient of
the OSSA Citizens Award and Claudette Medefindt at the OSSA Congress Gala dinner
Accommodation for Retina SA delegates was sponsored by the Road Lodge Port Elizabeth. Pictured here is Lloyd Griffin, Assistant GM with Gail Cillie and Claudette Medefindt.
RESEARCH UPDATE
Stargen Project
Oxford Biomedica recently announced FDA approval for a Phase l and lla clinical trial of which the much awaited
Stargen treatment for Stargardt Disease is a part. The trial will enrol up to 28 patients in a multinational trial in
France and America and will start in the second quarter of 2011. The trial uses the company’s registered Lentivector
to deliver a correct copy of the ABCA4 gene. The Foundation Fighting Blindness, the initial funders of the project,
said that the trial “reinforces the exciting potential for gene therapy to treat patients with Stargardt disease and
other vision robbing retinal degenerations”.
Editor’s note: In South Africa, the RD project at UCT, funded by Retina South Africa, has identified the ABCA4
mutation in over 200 Stargardt patients. UCT is in the process of trying to establish international collaborations so
that our patients may be included in future multi-centre trials. Have you had a genetic test yet? ORPHAN drug
designation
Orphan Drug Designation for Gene Therapy
Genable Technologies formed by Fighting Blindness Ireland has developed a gene based therapy to treat Retinitis
Pigmentosa [RP] caused by mutations in the Rhodopsin gene. The treatment has been granted EU Orphan drug
status which will assist in the treatment becoming commercially available. In Europe a disease can receive Orphan
designation if it affects less than 1 in 2000 in the population. The Adeno Associated Virus [AAV] treatment switches
off both copies of the Rhodopsin Gene and introduces a replacement gene which cannot be suppressed. Rhodopsin
gene mutations are common in Dominant forms of RP. Enzyme clue in AMD
New Clue for AMD
An enzyme DICER 1 has been found to be less active in the retina of patients affected by the dry form of AMD.
When the gene which makes this enzyme was turned off in mice they developed retinal damage. DICER 1 appears to
be necessary for destroying small pieces of genetic material called Alu RNA which then accumulates in the retina
with toxic consequences. Researchers will now look at either increasing levels of DICER 1 or blocking the formation
of Alu RNA. Source: Nature Magazine
$10 M to Study Treatments for RD
The National Eye Institute of America has awarded Case Western Reserve University US $10m to study the effect of
existing drugs on Retinal degeneration and also to study drug delivery systems for new or existing drug
interventions. At least 16 out of 24 FDA approved drugs from antibiotics to drugs fighting cancer or infectious
diseases have already shown some benefit in Stargardt disease. Source: Genetic Engineering and Biotechnology
News.
Valproic Acid to Treat RP?
A study at the University of Massachusetts has found that Valproic acid used in the treatment of migraines, seizures
and Bipolar disorders may have an effect on halting vision loss in RP patients. A US $2.1m clinical trial is in the
planning stage. The trial is expected to last for 3 years. Source: British Journal of Ophthalmology.
Aspartamine
One of our members, Michael Walmsley, has extensively researched the negative effect of Aspartamine on vision
and invites anyone who would like more information to contact him at michaelj@ceie.org.za. Do you have enough
Lutein in your food?
Lutein Content of Food
While avoiding food additives that may cause retinal damage we also need to increase our intake of natural food
components with known beneficial effects. One of these is Lutein, a powerful anti-oxidant which is a structural
component of the macular. It is found in a variety of leafy green or yellow vegetables and can also be found in
specially formulated products.
The US Department of Agriculture recommend 4-8mg of Lutein daily but RD patients should have at least 15mg
daily.
Clinical Trials Register
A new clinical trial register for trials in Europe has just been launched. See www.clinicaltrialsregister.eu.
The American register can be found at www.clinicaltrials.gov.
New Genetic Counsellors
At last, a private genetic counsellor is available for pre- test counselling and delivery of results in both KwaZulu-
Natal and on a sessional basis in Port Elizabeth. Remember that pre-test counselling is required before gene testing
can be done. Both are registered and will supply you with an invoice for your medical aid.
Caryn Todd: (Durban) 0798738240 email:
caryn.todd@gmail.com
Noelene Kingsley: (Johannesburg & Port Elizabeth) 0825475720 email:
noelene@geneticcounselling.co.za
A comprehensive list of genetic counsellors is available from the national office
New Faces at National Office
We have 3 new volunteers at the national office: Gwen Vermaak (Reception and Financial support),
Beppie Summersgill (Counsellor and Education specialist) and Anna Amorim (Marketing and Fund
Raising support). They all have years of experience in their particular fields and we thank them for the
precious gift of their time in the fight against retinal blindness. Can you spare a few hours a week to
help? Contact your local branch or the National office. Fighting Blindness is everyone’s challenge.
Retina South Africa is supported by the NLDTF
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