Dear Members and Friends,
As the year draws to a close, we reflect on all that we’ve accomplished together and look forward to an exciting year ahead. We express our heartfelt gratitude for your unwavering support.
This month, we honour the International Day of Persons with Disabilities, highlighting inclusivity and celebrating the remarkable strength and resilience of individuals living with disabilities.
In our research corner, we share the latest updates on Age-Related Macular Degeneration(AMD), Retinitis Pigmentosa (RP), Usher Syndrome, and more, showcasing breakthroughs that bring hope for the future.
Don’t miss out on our festive season raffle, where one lucky winner will walk away with a prize valued at over R15,000!
We extend our warmest wishes to you and your loved ones. May your festive season be filled with joy, and may the new year bring health, happiness, and hope. Together, we will continue to make a difference in the lives of those affected by vision loss.
The Editors
Claudette and Mariza
INTERNATIONAL DAY OF PERSONS WITH DISABILITIES
The International Day of Persons with Disabilities, celebrated annually on December 3, was established by the United Nations General Assembly in 1992. This day aims to promote the rights and well-being of persons with disabilities, who make up over one billion people worldwide, or about 15% of the global population. It is supported by the Convention on the Rights of Persons with Disabilities (CRPD), adopted in 2006, which emphasizes the importance of accessibility and inclusion as fundamental rights.
The observance originated from the International Year of Disabled Persons in 1981 and the subsequent Decade of Disabled Persons from 1983-1992, focusing on equal opportunities, rehabilitation, and prevention of disabilities.
Staff and Management Committee members will participate in several upcoming events. Claudette will represent our organization at the Department of Social Development, Linsay will attend the National Disability Rights Awareness Day hosted by Air Traffic & Navigation Services, and Mariza will join the Gauteng Disability Awards.
Visual Disability at Work & Beyond – Rand Merchant Bank
On November 19th, Linsay Engelbrecht, Head of Special Events and Para Sport Development at Retina SA, and Heinrich Vermaak spoke at RMB’s Visual Disability at Work & Beyond discussion. They shared their journeys as para-athletes, encouraging visually impaired employees to get involved in parasports and inviting RMB staff to volunteer through Retina SA’s Save Our Sight Campaign. This month, celebrating Persons with Disabilities, was the perfect time to highlight the transformative power of sports. Together, we aim to build a stronger, more inclusive community.
Featured in the photo above are Nicole, Pieter, and Oshay (guide dog) from SA Guide Dogs, Alex and Jeff from RMB, along with Heinrich Vermaak and Linsay Engelbrecht.
LIGHTING FOR SIGHT
HOW TO CHOOSE LED LIGHTS FOR EYE HEALTH
Understanding LED Lights and Eye Health
LED lights emit blue light, which has been linked to potential eye health issues, including macular degeneration. However, not all LED lights are harmful, and selecting the right type can mitigate risks.
The image contains 4 hanging light bulbs and the wording Lighting for Sight in Black Text
Selecting ‘Warm White’ LED Lights
Opt for LED lights labeled as ‘warm white,’ which have a color temperature of 2700K or lower, to reduce blue light exposure. These lights are less likely to contribute to macular degeneration and are more comfortable for indoor environments.
Limiting Exposure to High-Intensity Blue Light
High-intensity blue light, more common in ‘cool white’ LEDs and electronic screens, poses a greater risk. Limit exposure, especially before bedtime, to protect against potential eye damage.
DIS-CHEM RIDE FOR SIGHT
Our flagship event, the Dis-Chem Ride for Sight, will be held on Sunday, February 16th, 2025, at the City Stadium, Jubilee Road, Boksburg.
We are pleased to announce that Dis-Chem will be the naming sponsor, with Ensure Gold and DS 24 as secondary sponsors.
Cycle Lab has donated a superb Orbea road bike as the prize in the lucky draw. Additionally, a wonderful getaway at Pezulu Lodge will also be raffled. Both competitions are registered with Lotto. The Dis-Chem Foundation has graciously offered to match all these donations.
We need volunteers to assist at the event. Our partially sighted members can man the emergency numbers in the operations centre, and sighted volunteers are always needed at registration and at the event. Please contact our national office at 0860 59 59 59.
Early bird entries for the event are closed but you can get all the information and enter on our website https://retinasa.org.za/events/dis-chem-ride-4-sight.
For those who would like to take a leap and enter the Para Tandem event, please contact Linsay at: events@retinasa.org.za
YOUR SIGHT IS PRECIOUS
Please help those fighting to keep theirs, Support our Festive Season competition. Win a Luxury Hamper Worth Over R15,000 filled with Premium Gifts!
Festive-themed raffle ticket advertisement with logos for Fahrenheit Seafood & Grill, The Moscon Group, City Lodge Hotel, and Lions International at the top. The text ‘Festive Season Raffle’ and ‘Win a Luxury Hamper!’ is displayed prominently on a green background with gold stars, snowflakes, and wrapped gift boxes.
Join us in celebrating the festive season with our exciting year-end raffle.
TICKETS: R100 each (No limit on the number of tickets you can purchase!)
Every ticket purchased supports Retina South Africa in the fight against retinal blindness.
HAMPER INCLUDES:
• A weekend getaway for 2 including breakfast
• Luxury bed linen set
• Two pairs of Adidas sunglasses
• A dinner voucher for two
• Bottle of Glenlivet Scottish whiskey
• 1kg Christmas cake
• Couples spa voucher for a relaxing massage
DATE OF DRAW: Friday 13 December 2024
The winner will be announced via email and on our social media channels. We extend our heartfelt thanks to our amazing sponsors:
City Lodge Hotel Eastgate, Moscon Optics, Fahrenheit Restaurant, Lions Clubs International Multiple District 410,
Don’t miss out on your chance to win this incredible hamper!
Purchase your tickets now and make this festive season even more special.
SAVE OUR SIGHT CAMPAIGN
We are thrilled to announce the launch of the 2025 Save Our Sight Competition. Following the remarkable success of our inaugural event in 2024, Retina South Africa invites members and supporters to participate.
Participants who either continue their membership with a yearly fee or choose to support us through purchasing a Save Our Sight competition entry are eligible. Remarkably, every participant stands a chance to win R500 each month, whether they are renewing memberships or new supporters buying competition entries.
There’s no cap on the number of entries one can have, and a draw will be held monthly throughout the entire year of 2025. The competition officially kicks off on January 1st, 2025. We encourage all our readers to either renew their Retina membership, due on January 1st, or to support us by purchasing a Save Our Sight competition entry.
For Retina South Africa members looking to renew their membership please click here, or friends of Retina South Africa eager to contribute please click here, to participate in the Save Our Sight competition.
This competition is proudly registered with the National Lottery, ensuring that all proceeds are dedicated to supporting individuals with visual impairments and their families.
RESEARCH NEWS
PLEASE NOTE- Retina South Africa does not endorse any of the treatments or supplement discussed in this E-News. Please consult your eye care professional.
STELLAR RNA TRIAL FOR STARGARDT DISEASE
The STELLAR clinical trial is a research study of a potential new treatment for people with ABCA4 retinopathy – the most common form of Stargardt disease. Mutations in the ABCA4 gene interfere with the metabolism of Vitamin A in the retina causing a buildup of a waste product called lipofuscin.
RETINITIS PIGMENTOSA (RP)
PYC is developing the first drug candidate (VP-001) for Retinitis Pigmentosa type 11 (RP11)
RP11 patients enrolled in PYC’s ongoing Phase 1/2 studies have improved vision following treatment with VP-001.
Associate Professor Fred Chen of the Lions Eye Institute will present data on the safety/tolerability and efficacy profile of VP-001 in patients who have received a single dose of the drug candidate at the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) meeting to be held in Adelaide between November 1 and 4.
PERTH, Australia and SAN FRANCISCO, California – 31 October 2024.
RP 11
PYC’s RP11 Program Overview
• Retinitis Pigmentosa type 11 (RP11)is a blinding disease of childhood affecting 1 in every 100,000 people
• RP11 is caused by a mutation in 1 copy of thePRPF31 gene leading to a protein insufficiency in photoreceptor and Retinal Pigment Epithelial (RPE) cells
• VP-001 increases expression of PRPF31back to normal levels in RP11 patient-derived retinal organoids and iPSC-RPE³(RPE cells grown from patients after turning a skin sample from the patient into an induced Pluripotent Stem Cell (iPSC) and then into the specific cell type in the eye that is affected by the disease to provide a human model of the disease-affected eye outside of a human)
• VP-001 is the first drug candidate to have progressed into human trials for RP11 and has been granted fast track and orphan drug status by the FDA in America.
RETINITIS PIGMENTOSA AND CONE ROD DISEASE
Blue Rock’s Photoreceptor Cell Therapy is moving into a Clinical Trial. This cell therapy company is a wholly owned subsidiary of Bayer AG, has received authorization from the US Food & Drug Administration to launch a Phase 1/2 clinical trial for OpCT-001, a photoreceptor cell therapy for people with RP and Cone Rod Dystrophy. The trial will assess several dose levels ofOpCT-001 and is expected to enroll participants in sites across the US.
The photoreceptors to be used in the study will be derived from induced pluripotent stem cells (iPSCs). These are produced from a small sample of blood or skin taken from an adult human donor. The cells are then genetically tweaked to revert to a stem-cell-like state, and they are then coaxed to develop into virtually any cell type in the body, including photoreceptors. Furthermore, billions of cells(many therapy doses) can be produced from the cell sample.
The Foundation Fighting Blindness [USA] provided significant funding over several years to Dr. Gamm and his team for the development of retinal and photoreceptor cell therapies derived from iPSC.
USHER SYNDROME
A Phase I clinical trial has been launched in Perth, Australia, to evaluate the safety and tolerability of an emerging oral drug known as BF844 for the treatment of Usher Syndrome type 3 (USH3). The clinical trial will also evaluate how the drug is metabolized and distributed throughout the body. The trial will be completed in September 2025.
The trial, the first for an USH3 treatment, was launched by the USH III initiative, a non-profit organization dedicated to advancing research and developing treatments for USH3. The Foundation Fighting Blindness USA funded lab studies to prepare for the trial through the Brint Translational Research Program.
USHER SYNDROME RESEARCH
Usher syndrome is a genetic condition causing progressive vision and hearing loss. More than 15genetic subtypes of Usher syndrome have been identified. USH3 is caused by mutations in the gene CLRN1.
The Usher lll Initiative, headed by Cindy Elden, a co-founder of the Initiative, was instrumental in getting BF844 to the clinical stage. Moving a potential therapy out of lab studies and into a human trial is immensely challenging. This shows what dedicated and motivated patients can do to help in the search for treatments for retinal disease. What have you done in this regard. ????
AGE RELATED MACULAR DEGENERATION [AMD]
Nutritional supplement reduces risk of advanced AMD
The Age-Related Eye Disease Study (AREDS) — a landmark investigation conducted by the National Eye Institute (NEI) — determined that antioxidant supplementation can slow the progression of AMD. The AREDS formulation is an over-the-counter antioxidant supplement recommended for people who are at risk of developing advanced forms of either dry or wet AMD. The formulation includes the antioxidants betacarotene, vitamin E, and vitamin C, as well as the nutrients zinc and copper.
The NEI recently completed a second AREDS study (AREDS2) to evaluate the potential benefits of the antioxidants lutein and zeaxanthin and the omega-3 fatty acids docosahexaenoic acid (DHA) and eicosapentaenoic acid (EPA). The results of AREDS2 showed that DHA and EPA did not confer additional benefit in reducing AMD risk. The researchers from AREDS2 did recommend that beta carotene in the original formula be replaced with lutein, because beta carotene can increase lung cancer risk in current and former smokers. For more information on study, visit www.areds2.org.
ASTELLAS IZERVAY APPROVED BY FDA FOR ADVANCED DRY AMD (GEOGRAPHIC ATROPHY)
Astellas has received FDA approval for IZERVAY™(avacincaptad pegol) for the treatment of geographic atrophy (GA) secondary to advanced dry age-related macular degeneration. The drug was developed by Iveric Bio, which was acquired by Astellas. The drug, a C5 complement inhibitor, slowed the progression of lesion growth in two Phase 3 clinical trials. An overactive complement system, a part of the innate immune system, is implicated in the retinal degeneration associated with AMD. IZERVAY targets the C5complement pathway.
OCUGEN LAUNCHES MODIFIER GENE THERAPY CLINICAL TRIAL FOR ADVANCED DRY AMD (GEOGRAPHIC ATROPHY)
Ocugen has initiated a Phase 1/2 clinical trial of OCU-410, a modifier gene therapy designed to slow progression of the growth of lesions associated with geographic atrophy (GA). OCU410 is administered with a single sub-retinal injection that targets multiple pathways causing dAMD, including lipid metabolism, inflammation, oxidative stress, and complement activation.
VISION IMPROVEMENTS REPORTED IN EARLY STEM CELL TRIAL FOR WET AMD
Two patients with advanced wet Age-Related Macular Degeneration (AMD) in a Phase I clinical trial demonstrated improved visual acuity sustained for one year after a sheet of Retinal Pigment Epithelial (RPE) cells derived from embryonic stem cells was transplanted under their retinas. Each patient had one eye treated. Vision improvement for one patient was 29 letters or about 6 lines on an eye chart. The other had a gain of 21 letters or about 4 lines. Known as the London Project, the human study is taking place at Moorfields Eye Hospital in the UK.
DIABETES NEWS – by Karen Denton
Everyone involved with low vision needs to be prepared. The number of people who are affected by Diabetes continues to escalate alarmingly. The latest figures estimate that more than 800 million people worldwide have diabetes. As one of the all too frequent complications of Diabetes could be Diabetic Retinopathy we need to be alert to the problem and take well documented steps to avert problems. Check your waistline, have regular eye checks, eat whole foods from every colour of the rainbow, avoid highly processed foods, reduce your sugar intake, and exercise regularly see our website for more information.
Read more at https://www.theguardian.com/society/2024/nov/13/diabetes-rates-increase-world-study
MY SCHOOL/MY VILLAGE/MY PLANET
We still need your support to grow this income stream. Nominate Retina South Africa as a beneficiary AND remember to swipe your card. Join at any Woolies store or online at HTTP://www.myschool.co.za.
NO COST TO YOU!
PODCASTS
Do you have an interesting story to tell? Contact our national office to be interviewed on a podcast. See past episodes on YouTube and PLEASE subscribe.
The production and distribution of this newsletter is made possible by an unconditional educational grant to Retina South Africa from Roche Products(Pty) Ltd The views expressed in the newsletter do not reflect the views of Roche Products (Pty) Ltd.
Retina South Africa Disclaimer
Information disseminated by Retina South Africa is for information purposes only. Readers must discuss any intervention with their Eye Care Practitioner. Information in this E-News does not imply that Retina South Africa endorses any particular therapy, intervention or medication. Retina South Africa assumes no responsibility for the use made of any information provided in this newsletter.
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