DIS-CHEM RIDE FOR SIGHT 2018
The 30th edition of the Ride for Sight was held on Sunday 18th February 2018. This premier road cycling event was sponsored by Dis-Ch em Pharmacies and the City of Ekurhuleni hosted the event. This tremendous support and sponsorship ensures the continued success of this – our premier fund raising event. This was the 30th Anniversary of the event which has raised over R10M for research in South Africa. The Ride is managed and manned mostly by volunteers and we are indebted to all our supporters- and most of all the dedicated cyclists who once again cycled to restore the gift of sight. All the proceeds go directly to our RD Project at the University of Cape Town.
In spite of the decreasing numbers at many cycling events we were able to maintain a field of over 5000 cyclists. Dis-Chem Pharmacies and the Dis-Chem Foundation once again gave us wonderful financial as well as marketing support. The support from Ekurhuleni Departments of Sport, Recreation and Marketing was outstanding and this unique partnership of an NPO, Corporate, local Government and Community organisations proves what can be done when we all work together.
Winners of the Dis-Chem Ride for Sight Super Classic were Reynard Butler and Carla Oberholzer, fresh from her win at the SA Ladies Road Racing event.
The Ride also supports cycling teams who are working to develop the sport in the community. The East Rand Cycling team pictured right with Claudette Medefindt have shown amazing growth and this year had 32 riders with three team members cycling in the Elite and under 23 category with the cream of SA cyclists. Other teams who were supported are the Bhon4Kasi Club from Soweto and the junior team from Urban Ruins. This remarkable NPO is making a huge difference in the lives of talented youth in need of support and redirection.
Chairman’s awards were given out at the prize giving supper to: Jean Bowler, Hamnet Emergency Communications, Mervyn van Reenen, BestMed Road Rangers, Marius van Zyl and Knights of Pendragon Rotary Club who also received the best marshal team award. 2 People who received special recognition at the prize giving were Jean Bowler, treasurer of Retina South Africa since it’s inception and Derek McEwan from Dis-Chem Pharmacies.
Jean Bowler receiving her award from James Cape.
GENE THERAPY REGISTERED
The first ever gene therapy for Inherited Retinal Disorders [IRD], brought to market by Spark Therapeutics, was approved by the FDA in December. Although this will only treat patients with Leber Congenital Amaurosis [LCA] and early onset Retinitis Pigmentosa [RP] who have a confirmed RPE65 gene mutation, it is a magnificent first step to ensuring therapy for all. The price is prohibitive and unfortunately beyond reach of most patients. NOVARTIS has been licensed to market the therapy outside of the USA.
Jack Hogan, a 13 year old from New Jersey, USA was the first commercial patient to receive the therapy, Luxturna at the end of March. Spark has set up a fund to refund patients if the therapy is unsuccessful.
Claudette Medefindt, left, with Dr Jean Bennett, the internationally renowned researcher who pioneered the RPE65 gene therapy.
STEM CELL THERAPY FOR WET AMD
2 Patients in the UK with Wet Age Related Macular Degeneration [AMD] recently received new Retinal Pigment Epithelial [RPE] cells grown from Stem cells. Researchers at the University of California, Santa Barbara, engineered a retinal patch from human embryonic stem cells that were matured into RPE cells, the nurse layer of cells that underlie the Photoreceptors. In both AMD and Stargardt Disease, it is in this RPE layer, that the degenerative process first begins. The patch is then implanted under the retina to replace the damaged RPE cells.
A delighted Douglas Waters, 86 years old , was one of the patients to receive the therapy. He could barely see before the therapy and is now reading a book. Dr Peter Coffy study author said “We can stop people from going blind”. The trial will continue with 8 more patients. See : https://www.facebook.com/groups/27745746726/permalink/10156097587431727/
Retina South Africa is in discussion with clinical trial organizers to bring clinical trails to South Africa.
Each trial looks at a different type of interventions for different conditions. At this stage, internationally, patients who are being considered for possible inclusion in clinical trials will need to have a genetic diagnosis. Many South Africans do have a genetic result but have not shared this result with Retina South Africa.
Many imminent therapies will be condition specific and even gene specific. Please call the national office to find out more about genetic testing.
Cochlear Implants [CI] to restore hearing in Usher patients was until recently thought to only be successful in young patients. A recent report has debunked this theory and has shown successful CI in Usher 2a patients with a mean age of 59 years.
A team in France has shown that Cone degeneration in Usher Type 1 patients is triggered by the absence of USH1 proteins but prevented by antioxidant treatments in mouse models of the disease. See also sensible eating.
CRISPR CAS 9 GENE EDITING
This amazing technology is being developed to edit the human genome and is receiving worldwide attention and concern. If you would like to know more about this amazing research and the moral dilemma it has sparked, open the link : https://youtu.be/1BXYSGepx7Q
And for the more scientific minded here is a cool animation from Nature.com that shows how it works and the unlimited potential of this exciting research.
PIXIUM ARTIFICIAL RETINA
PRIMA, a miniaturized wireless photovoltaic sub-retinal implant, has successfully been implanted into a patient with Atrophic Dry-AMD.
PRIMA is a miniaturized new generation totally wireless sub-retinal implant, a micro photovoltaic chip of 2×2 millimeters and 30 microns thick, and is equipped with 378 electrodes. Implanted under the retina via a less invasive surgical procedure, it acts like a tiny solar panel that is powered by pulsed near infrared light through a miniaturized projector integrated into a pair of glasses along with a mini-camera, worn by the patient. [ yes, very technical but so is the chip.] See: www.pixium-vision.com
NEW ANTIOXIDANT UNDER INVESTIGATION
The Foundation Fighting Blindness, USA, has announced that they are supporting research to investigate N-acetylcysteine-amide, [NACA) an antioxidant that may slow the rate of degeneration in many forms of RP.
They will invest up to $7.5 million to advance the potential therapy into
and through a Phase II clinical trial. In several animal models, including previous FFB-funded lab studies of rodent models at Johns Hopkins University, NACA slowed retinal degeneration. The drug is designed to slow vision loss by protecting retinal cells from oxidative stress, a process that accelerates degeneration in many inherited retinal conditions including RP. When the cells in the body process oxygen, they produce byproducts known as free radicals, which can be harmful if the body is unable to neutralize them. In certain diseases and conditions, cells have a difficult time neutralizing free radicals, and damage occurs.
Patricia Zilliox, PhD, chief drug development officer at FFB-CRI, said “Oxidative stress causes cell degeneration and vision loss in virtually all forms of RP, so we are hopeful that NACA, with its anti-oxidative properties, can benefit most people with RP, regardless of the gene mutation causing their disease.” For the original blog post by Ben Shaberman , click here:
SO WHAT ABOUT ME?
The most common questions posed to Retina South Africa are:
How can I get into a clinical trial? Why is therapy taking so long?
Stem cell and other therapies are advertised on the internet – should I try them?
Clinical trials are strictly controlled and take years to complete the 3 phases. Phase 1 and 2 involve small numbers of patients who live close to the clinic for regular monitoring. These 2 Phases test safety and sometimes different dosage levels. Once successful they then move to phase 3 with larger numbers of patients. Retina South Africa is in discussion with a number of trial organisers in an effort to bring multi- center phase 3 clinical trials to South Africa where our patients could be eligible for participation.
Patients need to ensure that they are registered with Retina South Africa, have a genetic test result that is lodged with Retina South Africa and have regular eye examinations with their Ophthalmologist.
Clinical trials are strictly monitored to ensure your safety. The RPE65 Gene therapy, that has just been registered, took ten years from the first patient tested to registration. We know that this success will speed up the process for other future trials.
We understand your frustration, but do not be lured by unscrupulous charlatans peddling so called “cures”. Ask for results of clinical trials published in reputable scientific journals. Discuss with your Ophthalmologist or contact Retina South Africa. Treatments are on the way, so don’t risk losing your remaining vision to risky and unproven interventions.
RETINA INTERNATIONAL CONGRESS
The Retina 2018 World Congress was held in Auckland, New Zealand from the 7th to 11th February 2018. The majority of the speakers were from New Zealand and Australia and the quality of the presentations was extremely high. The highlight of the congress for Claudette was meeting with two of the most eminent researchers from the USA – Prof Jean Bennett who perfected the RPE65 gene therapy, and Prof Eric Pierce who is doing amazing research into stem cell therapy for IRD. Key note speakers who are renowned internationally and have both visited South Africa were Gerry Chader and Elise Heon. Both gave superb presentations in their informative and easy to understand style.
Claudette represented Retina South Africa at the congress and has now retired as Deputy President of RI but remains on the Management Committee in an advisory capacity. The next RI congress will be held in Iceland in 2020 and this promises to be exceptional in every way. Start saving now !!
Claudette Medefindt, back left, with new Retina International CEO Avril Daly, and front, Carla and Gerry Chader.
Claudette, left, with RI International President Christina Fasser, centre and Prof Elise Heon from Toronto, one of our all-time favourite researchers.
The damaging effect of oxidative stress is a modifiable risk factor in retinal disorders. So eating a diet rich in antioxidants is an easy way to slow the rate of degeneration. Colorful fruits and vegetables are high in antioxidants and oily fish is high in Omega 3 fatty acids -also known to slow retinal degeneration. One of the most important antioxidants for retinal health are Lutein and Zeaxanthin, found in green leafy vegetables.
Avoid all synthetic food additives and artificial flavorings, colorings and sweeteners. Eat fast foods very sparingly and maintain a healthy gut microbiome. A simple Eating guide is available from Retina South Africa.
Discuss supplements with you eye specialist – Ocuvite for AMD, Retina Plus for RP or Macula plus for Stargardt Disease and Cone Rod Dystrophy. If you have any early onset central vision loss you must NOT take any supplements containing Vitamin A or Beta-carotene. Smoking is the worst thing you can do to your vision while moderate, regular exercise is very necessary.
Students who are wanting to know more about traveling and studying in Europe are invited to attend a conference in Frankfurt, Germany –
Campus visually impaired – Studying in Europe without borders
Location: Frankfurt am Main, Hessen, Germany
Date:15th (Wednesday) –19th (Sunday) August 2018
Registration by email till 30th April 2018 at: Campusemail@example.com . The registration fee is € 100 and travel support up to € 300 will be considered.
ASSISTANCE YOU CAN USE
APPS FOR YOU
Anton Van Rooyen, our resident low vision assistive devices specialist, has posted a list of mobile apps that will help you on his home page:
Sight Seekers Home page: www.sightseekers.co.za and in depth info on http://www.sightseekers.co.za/mobile_apps.html
Anton is a source of useful information and can be contacted from this website for advice on assistive technology.
Novartis has successfully launched this useful app in Switzerland, Hong Kong, Malaysia, Thailand, East Africa, Italy, Nordics, Spain, Australia, Turkey, South Africa, China, Ireland and Singapore. To date there have been more than 3500 downloads and they expect this number to grow significantly over the coming year. The countries that are in the process of planning a forthcoming launch are Germany, US, France and Middle East, UK and Mexico. Various Retina organisations, including Retina South Africa tested the app in the development stage.
This amazing vison enhancing device was demonstrated at the National meeting of Retina South Africa on 13th April. The device is reminiscent of the fictitious one seen in Star Trek, but works. Those with central vision loss such as Stargardt Disease or Dry AMD would appear to benefit more. Manny Moodley, Western Cape Chair and a busy lawyer was especially impressed. It does not help with mobility or driving but is excellent at helping you see static objects- presentations, blackboards, faces etc. You can use it for TV viewing but not for fast moving sports programs. It has a field of 37.5 ̊ and magnification from x2 to x24. It is recommended for people with a visual acuity from 6/24 to 6/240. It has OCR and freeze capabilities with an SD card and can read Pdf documents. It is a truly amazing device and the only drawback is the price – around US$10 000. For more info contact Anton at www.sightseekers.co.za
FURY MOTORS RAFFLE
Please place your orders now for raffle books to win a Mazda Motor Car. The books will be available in the next few weeks. A book of ten tickets costs R100. Contact national office.
WE NEED YOUR INVOLVEMENT
Every member can make a difference and bring us closer to finding treatments for retinal vision loss. Please ask you employer to consider us as a recipient for a CSI donation. We will follow up with a proposal. Donations exceeding R250 are eligible, on request, for a Section 18a tax deduction.
Thank you if you have nominated Retina South Africa as a beneficiary on My School/ My Planet at www.myschool.co.za.
We could double our donation from this project, at no cost to you at all. Thank you if you have already registered and please remember to swipe your card.
Do you wear contacts? Have you tried the funky coloured lenses? ColourVue will be donating R10 from each box sold to Retina South Africa. Thank You ColourVue.
CIRCLE OF LIGHT
The new competition has just begun but you still have time to enter. You can participate by donating R250 per year to the competition and stand to win a cash prize of R500 every month. All proceeds go directly to the RD Research project at UCT. See banking details under membership fees below.
A membership fee of R200 per family is now due. If you cannot afford this please request a fee waiver form from the national office. As we move to a single constitution only members in good standing will be eligible to vote. Banking details: Retina South Africa, Standard Bank, Bedfordview branch, Code 018305, Account number 020312164. For overseas payments the swift code is SBZAZAJ. Please let us have a copy of the eft so that we can track your payment. An extra donation to the RD research project will be welcomed.
KZN SUPPORT GROUP
2 of our KZN members are keen to start a support group in the Durban area. If you are interested in getting involved or assisting in any way, please contact us. We will then connect you with Simmi and Jane. As clinical trials and therapies become a reality we need to be more closely connected with all our members. If you would like to start a support group in your area please contact us for help and guidance.
The quarterly National Management Committee was held on Friday 13th and Saturday 14th April at the Courtyard Hotel, Eastgate. A total of R R1 023,450 was pledged to the RD Research Project at UCT. The branches contributed a total of R74 000, SMS Campaign R1500, My Schoo/ My Planet project R38 500, Circle of Light R30 200 and the Ride for Sight R600 000. The balance of R279 250 will be contributed by the national office.
Thank you Courtyard Hotel, Eastgate and the delightful manager Bronwen Poulton for your generous hospitality, the wonderful service and helpful, friendly staff who ensure a pleasant stay for any partially sighted or disabled guests. https://clhg.com/hotels/620/Courtyard-Hotel-Eastgate-Johannesburg
The production and distribution of this newsletter is sponsored by Bausch and Lomb via an unconditional educational grant to Retina South Africa. The views and comments expressed in the newsletter do not necessarily reflect the views of Bausch and Lomb.
THANK YOU BAUSCH AND LOMB FOR YOUR CONTINUED SUPPORT OF OUR WORK.