YEAR END MESSAGE FROM THE CHAIR
Dear members and friends,
The end of the year brings no greater joy than the opportunity to express to you our immense gratitude for your continued support, trust, and loyalty.
As we reflect on the past year, we are proud to say that we have grown stronger through challenging times and have very exciting plans for the year to follow, which will enable us to grow even further.
The team at Retina South Africa wishes you peace, joy, and prosperity throughout the coming year. Thank you for your continued support and partnership. We look forward to working with you in the years to come.
Stay safe and have a blessed holiday season!
Chairman, Retina South Africa, and Deputy Chairman of Retina International Manny Moodley
THE YEAR IN REVIEW
An opinion piece by Claudette Medefindt
2023 has been, for many people a very long and difficult year. After Covid and the time it took for recovery, the expectations were that everything would be “back to normal”. What has surprised me, and many others is that the old normal has disappeared. We find ourselves in a faster, less kind world where everything seems to be more challenging and many people more self-absorbed. The changing weather patterns, the increasing cost of living, power outages, and the increasing violence add to our feelings of fatigue and sense of isolation. As I write this it is the International Day for People with Disabilities but on reflection, the poor and less privileged are no better off than last year. I personally suggest that we rename not only the day but the name of our community. We are Special People, yes, with many special needs but we are survivors and despite the odds we cope and handle life with courage and hope. So, I wish you all a very happy festive season and a better “NEW “year.
DIS-CHEM RIDE FOR SIGHT 2024
The Dis-Chem Ride for Sight will be held on Sunday 18th February at Boksburg City Stadium. As usual there will be 2 distances – the 116km Super Classic presented by Ensure and the 62km DS 24 Challenge and an 8km Fun Ride for the absolute novice.
Para Category
This year we are making a concerted effort to encourage more of our community to try cycling. There will be special categories and prizes for para people on the 62 km event. Linsay Engelbrecht is the driving force behind this initiative and if you would like to assist or venture out of your comfort zone into the empowering sport of cycling, please contact her at: events@retinsa.org.za.
Two introductory sessions will be held to match you to a pilot, the sighted person who cycles at the front. Until then please keep fit, by walking, jogging, swimming, or preferable spinning at home or at your local Virgin Active Gym.
Not up to road cycling? The Spin for Sight in support of the Ride for Sight will be held at various Virgin Active Gyms in Johannesburg later in the year. For more details contact Linsay. Not in Joburg? Ask your local gym to organise a Spin for Sight. Call us to assist in organising an event.
Two of the most accomplished Para-Tandem cyclists in South Africa are on our team to assist novice cyclists.
Linsay Engelbrecht who represented South Africa at the Commonwealth games, pictured right, at the back, with her pilot Angela, and Gavin Kilpatrick, our Paralympic medallist pictured below with his pilot Rob. Both Linsay and Gavin have Stargardt Disease so the pilots ride in front!
YOUTH ENGAGEMENT
By Sonya Lee Mahabeer
As 2023 ends, the Youth Sub-Committee of Retina South Africa is thrilled to reflect on a year marked by collaborative podcasts that have resonated with our vibrant community. We are grateful to all who shared their experiences, providing inspiration and encouragement for the youth.
As we eagerly anticipate 2024, we invite visually impaired youth to engage with us. Your input is invaluable.
We encourage you to contact the Youth Committee, share subject matters and topics that resonate with you, and join us in shaping a future filled with empowerment and unity. Together let’s make 2024 a year of continued growth and mutual support.
Email me: sonya@retinasa.org.za.
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[Editor personal comment: I am a user of both Retina Plus and NAC. The stabilisation and modest improvement in my vision have been confirmed by my Low Vision Optometrist]
PODCAST AWARD AGAIN
Our podcast series- Retinal Realities was judged to be in the top ten in South African Science podcasts in November by Feedspot.
Well done team!!!
Please like, share, and subscribe to our YouTube channel. Thank you, Roche Products, for your support
BAYER EDUCATION PROJECT
This multistakeholder project creates awareness and education to Aged Facilities, Corporates, Government Departments, and seminars – wherever possible. The talks include information about Age-Related Macular Degeneration, Genetic Retinal conditions, much-needed information, and prevention advice on the prevention of Diabetes and Diabetic related vision loss. The Covid pandemic has resulted in a huge increase in the risk for Diabetes. We are proud to welcome the support of the South African Optometric Association and Dis-Chem Pharmacies who join us at many of these days. The looming rise in Diabetes and related vision loss is a serious threat to eye care in South Africa.
Pictured Left to Right – Victoria, Karen, Lindiwe, Judy and Claudette educating at the Probis Club Benoni in November
Pictured Left to Right – Eugene Stiglingh, Claudette Medefindt, Lionel Dobell, Jorge Levinson (Head of Bayer) and Caryl Baum at the Bayer South Africa Education Day
UCT FOLLOW UP ON STARGARDT TRIAL
My name is Monique Bäcker, I am a master’s student in genetic counseling at the University of Cape Town (UCT). I am planning to conduct research on individuals who participated in the SeaSTAR gene-based clinical trial, a first in South Africa. I am very interested in gaining insight into individual’s experiences and perspectives on their healthcare journey through a clinical trial. I am therefore looking for individuals to share their perspectives on their decision-making and motivation for wanting to participate in a clinical trial. This information can assist healthcare providers in providing better patient-centred care and assist clinical trial organisers in conducting and designing clinical trials in the future. This is important as gene-based therapies hold much hope for individuals’ health and we hope for more trials in the future to cure retinal degenerative conditions.
We are currently awaiting ethical approval and hope the study can commence in early 2024. The success of this study will depend on the participants of the SeaSTAR clinical trial, in sharing their experiences and making their voices heard. Look out for more communication next year. If you have any questions in the meantime, you can reach out to Claudette Medefindt from Retina SA or myself, at bckmon003@myuct.ac.za.
GRANTS FOR RETINA SA
We are pleased to announce that the National Lotteries Commission has awarded Retina South Africa a generous grant towards our administrative costs for 2024. This grant is very welcome and ensures that our staff contracts will be renewed for 2024.
We have also received a generous grant from Bayer South Africa to support our Advocacy and Education project.
We are very sad to announce that our funding cycle from the Mary Oppenheimer and Daughters Trust as well as the Rachel Diamond Foundation has ended. We thank them most sincerely for their wonderful support over many years. The loss of these two major funders will have a significant impact on our Youth and Indigenous genetic testing project as well as the viability of our social support service to all South Africans losing vision to retinal conditions.
RESEARCH NEWS
- VITAMIN A AND E – the final word
Research undertaken by Dr Eliot Berson between 1984 and 1991 indicated that a small benefit may be derived by patients with Retinitis Pigmentosa [RP].
A team at Mass Eye and Ear led by Professor Eric Pearce and Dr Jason Comander has published a retrospective analysis of this research and has found that people with RP derived no overall benefit from vitamin A.
However, they have reaffirmed Dr Berson’s findings that people with RP should avoid Vitamin E supplementation, because of its negative effect on retinal health. They also noted that the AREDS2 supplement, which reduces the risk of advanced Age-related Macular Degeneration (AMD) for those with intermediate-stage AMD, contains vitamin E and should therefore NOT be taken by RP patients who should check the label of any supplements to ensure that it does NOT contain Vitamin E. All patients should always consult with their Eye Specialist about any treatment or supplementation that they are taking.
- Metformin in the news
This drug developed for Diabetes was recently shown to have a promising impact on the treatment of long Covid.
Recent animal trials have shown that it may also be effective in the treatment of Stargardt Disease.
A report in the Investigative Ophthalmology & Visual Science journal Vol.64, 476 discusses the use of Metformin in animal models of the ABCA4 gene mutation. The researchers stated that they wished to test metformin as a viable treatment for Stargardt disease. They used an ABCA4 – mouse model with a disease process similar to Stargardt retinopathy characteristics, including lipid-rich sub-RPE deposits. They propose to test the therapeutic effect of metformin in Stargardt patients in a phase I/II clinical trial.
- Some vision restoration in clinical trial for Photoswitch Therapy
Kiora Pharmaceuticals has announced some vision restoration for participants in ABACUS-1, its Phase 1/2 clinical trial in Australia for KIO-301. This photoswitch therapy delivers a molecule designed to bestow light sensitivity to retinal ganglion cells in people with advanced retinitis pigmentosa (RP). Results for six patients in the study were presented in November at the American Academy of Ophthalmology annual conference by Professor Russell N. Van Gelder, from the University of Washington, School of Medicine.
Retinal ganglion cells, which are downstream from photoreceptors, often survive in advanced retinal disease but don’t naturally respond to light. KIO-301 is delivered by a standard injection into the vitreous, the soft gel in the middle of the eye, and one administration of the therapy appears to be effective for about a month. Of the six patients treated the group who received a higher dose had the bigger improvement in rudimentary vision. The company is planning a Phase 2 study at three sites in Australia in which 20 patients will be enrolled and is exploring the enrolment of patients with choroideremia and Stargardt disease in a future clinical trial. The Foundation Fighting Blindness provided $1.3 million in funding through its Translational Research Acceleration Program and a Gund Harrington Scholar Award to Richard Kramer, PhD, University of California, Berkeley, for the development of related photo switches for restoring vision.
- Meira GTx and X Linked RP
AAV-RPGR is designed to treat the most common form of X-linked Retinitis Pigmentosa (XLRP) caused by mutations in the eye-specific form of the RPGR gene called “RPGR open reading frame 15” (RPGR ORF15). Both rods and cones photoreceptors require RPGR ORF15 to function.
Meira is currently conducting a Phase 1/2 clinical trial of AAV-RPGR in adult and paediatric patients, with this form of XL RP.
They now expect to progress AAV-RPGR into the Phase 3 Lumeos clinical trial. In 2020, MeiraGTx announced six, nine, and 12-month results from the dose escalation phase of the Phase 1/2 trial, with data demonstrating statistically significant improvement in retinal sensitivity and vision-guided mobility. AAV-RPGR has received Fast Track and Orphan Drug designations from the FDA, as well as PRIME, ATMP and Orphan Medicinal Product designations from the EMA.
- NAC Attack
This is a multicentre, placebo-controlled clinical trial to test Oral N-acetylcysteine in patients. NAC is a strong antioxidant that reduces oxidative damage. NAC Attack is a randomized, placebo-controlled multicentre trial that will test whether NAC can slow the progression of RP. The results are critical to the RP community because if NAC proves beneficial it will mean lifelong treatment with NAC for patients with RP. We understand the anxiety and concerns that RP causes, but it is best to avoid self-medication with supplements.
Other antioxidants such as Lutein, Zeaxanthin, Alpha Lipoic Acid, and L- L-glutathione have been accepted as a safe way to protect the retina against anti- oxidative stress. The clinical trial to test this type of antioxidant in RP was discontinued due to a lack of long-term funding. Animal trials showed encouraging retinal protection with the use of this supplement.
SUB COMMITTEES SHOW GREAT PROGRESS
The sub-committee structure within Retina South Africa is showing tremendous progress. These committees meet monthly and form an advisory function to the main Management Committee. Committees’ duties are not onerous and monthly virtual meetings last around an hour. Some email correspondence is required. These committees are Administration, Education and Awareness, Finance, Fundraising and Marketing, Governance, IT, Patient Services, and Youth. Contact Claudette for more information e: claudette@retinasa.org.za
UNDERSTANDING YOUR VISION LOSS
The retina lines the back of the eye, and converts light into a neural message, which is sent to the brain via the optic nerve. The brain then interprets these signals into a visual picture. There are two types of photoreceptors in the retina – rods and cones. Rods are more plentiful and occur mostly on the outer edges. They are responsible for low light vision and side [peripheral] vision.
Cones are found in the central retina and are used for fine focus vision, such as reading, writing and face recognition.
More in the next Issue of ENews.
MYSCHOOL/ MY PLANET
THANK YOU!! To all those who have nominated Retina SA as a beneficiary AND remembered to swipe your card, we thank you most sincerely. We hope to raise a record amount over the festive season. KEEP SWIPING.
Join at any Woolies store or online at www.myschool.co.za at NO cost to you. You can change and add up to 3 beneficiaries. Thank you.
PATIENT SUPPORT SERVICES
Contact Retina South Africa for advice, support, counseling, or referral to specialist service providers. Contact the office at headoffice@retinasa.org.za, call 0860595959, or contact us via the website www.retinasa.org.za
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.
