The 35th Dis-Chem Ride for Sight cycle race held at the Boksburg Stadium attracted 2 800 starters, reflecting an enormous 50% increase on the previous year’s entry numbers. 

There were three race distances on offer: 116 kilometres, 62 kilometres and an 8-kilometre fun ride for the less adventurous. 

A strong breakaway of six riders: Kent Main, Jaco van Dyk, Jared Hay, Christiaan Klopper, Casper Kruger, Bradley Scott and Dirk Nel opened up a near record 6-minute advantage on the peloton in the Elite Men’s race. 

Main and Scott eventually separated themselves from the other 4 riders, leaving Honeycomb Bee’s Scott to clinch the honours in a thrilling sprint finish. In doing so recording his maiden professional race victory, with Klopper filling third place. 

The women’s race was dominated by the Sandton/Cycle Nation City team, whose young newcomer Lisa Bone, in turn, recorded the biggest victory of her career, when outsprinting her highly experienced teammate Jo van de Winkel, for the honours from a two-up breakaway. 

Their team leader, the reigning National Women’s Road Champion, Carla Oberholzer, outgunned the peloton to secure a clean sweep of the  podium spots for their team. 

The race was superbly presented in 30 degree-plus conditions by Retina SA, whose main objective is to Restore The Gift Of Sight and whom have raised more than R12m from the previous renewals of the event for their amazing cause. 

For individuals with visual impairments, staying connected to the world is perhaps even more crucial than for those with full sight. They yearn to understand the happenings in their local community and the world at large. This is where the radio comes into play, serving as a vital lifeline that delivers news, music, stories, chat shows, and serials. In essence, it provides an indispensable link to the world.

The beauty of radio lies in its simplicity and accessibility. It is affordable and available to everyone, irrespective of their race, religion, or socioeconomic status. It breaks down all barriers, reaching out to every corner of the globe.

For many visually impaired individuals, the radio is more than just a source of entertainment. It helps combat feelings of isolation and loneliness that are often associated with visual impairment. But to truly understand the impact of radio on the visually impaired, let’s hear from someone who lives this reality every day – Mariza Jurgens, a leader at Retina SA.

Mariza shares,

“When you are blind, you need words to see, and that’s what a radio provides for me. It was through the radio that I felt a part of the Springboks World Cup Victory. I can listen to novels serialized on the radio and discuss them with my sighted friends on an equal footing.”

She further adds,

“Radio also offers blind children the opportunity to access education from the best teachers available. So, for me and all other blind people, a radio is much more than just a communication device. It is a companion and our primary source of news and information.”

In conclusion, the radio plays a pivotal role in the lives of visually impaired individuals, serving as their eyes to the world. It is not just a communication device but a companion that keeps them informed, educated, and connected.

Hello! I am Dr Lisa Roberts, and I’m a scientist navigating the fascinating world of genetics. My work revolves around deciphering the genetic code that contributes to various forms of blindness. My mission to identify the genes responsible for inherited retinal diseases is as challenging as it is rewarding. My inspiration is drawn from witnessing the resilience and strength of individuals navigating a sightless world.

As a woman in Science, I am part of a growing force of female scientists making significant contributions to the field. We bring unique perspectives and strengths to our work, driving innovation and discovery. We are questioning (and changing) academic culture along the way, hopefully clearing the pathway for brave, bold scientists of the future. I personally find it hugely rewarding to be in a position where I can impact the next generation of scientists, observing their growth as they develop incredible skills and embrace their curiosity. 

The Science Behind the Sight

Inherited retinal diseases are a group of rare eye conditions affecting the retina. Did you know the retina is actually considered an extension of the brain? These diseases, such as Retinitis Pigmentosa and Stargardt disease, can lead to severe vision loss and even blindness in families, because they have a genetic basis. The complexity of these conditions is immense, with over 270 known genes (and thousands of different genetic mutations) associated with inherited retinal diseases.

The Journey of Discovery

My work is like a detective’s investigation: sifting through the three billion letters of DNA code, to find the “typos” (genetic variants) behind these eye conditions. It’s a meticulous process, requiring precision, patience, and a deep understanding of genetic principles and the intricacies of the human genome. I collaborate with a diverse team of scientists, researchers, genetic counsellors, and clinicians in the pursuit of knowledge, each one bringing a unique perspective and skillset to the table. Together, we strive to identify the genetic mutations and mechanisms of blindness, contributing to a growing body of understanding, and publishing groundbreaking research papers.

The joy of discovery is exceptional, but the journey of a genetic scientist also demands resilience and adaptability – we are faced with challenging laboratory work and data analysis, ethical dilemmas to consider, and funding constraints. It’s important to remember all hurdles represent opportunities to learn and grow. 

The Impact of Our Work

Beyond the laboratory, the implications of our research are profound. Meeting these families is a privilege that has been one of the most rewarding aspects of my career. I am regularly reminded that each gene discovered, each mechanism understood, brings us a step closer to a future where inherited retinal diseases are no longer a life sentence of vision loss. By identifying the genes responsible for these conditions, we open the door to for targeted gene therapies and personalised medicine.

I am acutely aware of the importance of community engagement and community empowerment, so I enthusiastically advocate for equitable access to gene-based therapies in Africa. Education, awareness, and increased accessibility to genomic medicine are key pillars in the mission to ensure that our research translates into real-world impact.

The Future is Bright

Over the past 25 years, I’ve witnessed a remarkable transformation of the field of genetics. Technological advancements have allowed us to explore the human genome to a scale we had not thought possible, catapulting our understanding of DNA; the code of life. The collective achievements of the scientific community specifically dedicated to understanding and solving inherited retinal disorders are truly incredible. I cannot even begin to predict where we’ll be in a few short years! But, as we light the way for aspiring scientists, I am certain that the path ahead is filled with promise.   

The photo shows some of the Women in the Retinal research team, in the Division of Human Genetics, UCT (Some of the team members were unfortunately unable to join for the photograph).

From Left to Right:
Nicole Midgley, Dr Lisa Roberts, Sister Gameda Benefeld, Indy Van Rensburg and Lucia Motsatsi Makoala

Attorney Manny Moodley, the Chairperson of Retina South Africa, and its National Management Committee, wishes to congratulate the South African specialist Schools for the Blind as well as all Blind and Visually Impaired scholars attending schools for Learners with Special Education Needs (LSEN schools) on their excellent results attained in the 2023 Matric Examinations.

Mr Samkelo Gumada, from the Athlone School for the Blind in Cape Town, was selected as one of the country’s top 34 Matric performers, making him the top Matric student with a disability in South Africa. Prinshof School for the Blind in Pretoria managed to achieve a hundred percent pass rate, with the vast majority of students achieving a Bachelor’s Pass. Similar notable achievements were also reported by other specialist and LSEN schools with visually impaired learners in other Provinces. Visually impaired students also achieved good results in mainstream schools with Miss Janine Futselaar, a Retina Member, achieving 7 distinctions in the IEB Matric results.

Mr.  Moodley further stated that Retina SA wished to acknowledge the prominent role played by the SANCB’s (South African National Council for the Blind’s, of which Retina SA is also a member) Education Division in contributing towards the overall success of visually impaired learners. Noting that the Council holds an annual Principals Forum over a 3-day period at its Optima College Campus in Pretoria where school principals involved with teaching visually impaired learners, meet to present, discuss, workshop, and formulate resolutions which are addressed by the SANCB Education Committee during the year. These Forums are invaluable towards assessing shortfalls and establishing training modules, best practice methodologies, guidelines and policies for visually impaired scholars at LSEN schools. Including addressing issues surrounding the Department of Basic Education’s introduction of Second Chance Matric for Learners with Disabilities, and the SANCB’s support structures, together with one of its 111 Member Organisations, Tape Aids for the Blind, in providing resources and mentorship for students registered for Second Chance via the SANCB Provincial Education Sub-Committees (PESCs) in all nine provinces.

Principals also attribute their matric successes to the support and assistance given to learners attending SANCB’s Annual Winter School, held over a period of one week at its Optima College Campus in Pretoria. Where specialist educators provide learning support materials and breakaway workshops focusing on different curriculum subjects for both visually impaired learners and their accompanying educators to encourage a train the trainer mindset.

SANCB’s Annual Braille Cup also encourages LSEN Schools to maintain a high level of braille literacy throughout the year.

Mr. Moodley further stated that Retina South Africa hoped that these outstanding matric successes of visually impaired learners together with the unwavering support of the SANCB, continued to grow from strength to strength.

The 35^th Ride for Sight will be held on February 18^th 2024. This will be the 16^th year that Dis-Chem Pharmacies will be the naming sponsors of this quality cycling event which will be held at Boksburg City Stadium, Jubilee Road in Ekurhuleni.

Retina South Africa, the event organisers are appealing to all cyclists to support this enduring and popular road racing event. The co-organisers are all volunteers from community clubs and societies, all experts in safety, cycling, logistics, event management etc. Their dedication and commitment ensures that all the proceeds from the event go directly to Retina South Africa’s research and empowerment projects for South Africans with retinal blinding conditions. These conditions include Diabetic Retinopathy, Macular degeneration, and a host of genetic conditions that, collectively, affect an estimated 1 million South Africans from every community.

The event offers two distances- the 116km Super Classic presented by Ensure Gold that is a seeding event for the two mega rides in the country- the Virgin Active Ride Joburg in 2024 and the iconic Cape Town Cycle Tour 2025. There will be cash prizes to winners in all the official CSA racing categories.

Fun riders may opt for the DS 24 – 62km challenge with a special category for Para cyclists. Category prizes of vouchers, hampers or products will be awarded to winners in this event.

Linsay Engelbrecht the well-known Para Tri Athlete who represented South Africa at the 2022 Commonwealth games is recruiting pilots with tandems to pair with people with vision loss who would love to experience the exciting sport of road cycling. There will be special categories for all para cyclists, as we celebrate accessibility and inclusivity in cycling. Contact her at events@retinasa.org.za

Online entries are open until February 5^th and all pre-entries will receive a superb Dis-Chem Goodie bag and a  R50 shopping voucher from CycleLab. All entrants are eligible for superb lucky draw prizes including a Venter Bike Trailer, a Sealy Bed set, Cycle Lab vouchers, Biogen Hampers, Vision Works and Moscon sunglasses and many more. A superb Orbea gravel bike valued at R45000, sponsored by CycleLab is the prize up for grabs on the donation draw and Dis-Chem Foundation will match every donation of R50 or more.

Online entries are open at https://bit.ly/3sidVJb 

For more information on the event go to www.retinasa.org.za/events/dis-chem-ride-4-sight

FAST FACTS
Date: Sunday 18 February 2024
Venue: City Stadium, Jubilee Road, Boksburg
Distances: 116km Super Classic presented by Ensure
62km DS24 challenge which includes the Disability Category
Online entries close February 5^th https://bit.ly/3sidVJb
Late entries if available will be at Cycle Lab Lynnwood, Pretoria on Thursday 15^th February; Cycle Lab Fourways, Friday 16^th February; or Cycle Lab Boksburg, Saturday 17^th February until 14h00. 

WhatsApp Queries to 0833065262,
Please join us and cycle to restore the gift of sight.

Released By:
Retina South Africa
NPO 003-184
Email: headoffice@retinasa.org.za
Tel: 0114501181

For Interviews contact:
Linsay Engelbrecht
SA Para Triathlete
Email: events@retinasa.org.za
Mobile: 0845549227

Claudette Medefindt [English]
Race Secretary
Email: claudette@retinasa.org.za
Mobile: 0833065262

Mariza Jurgens [Afrikaans or English] 
Marketing Retina South Africa
Email: Mariza@retinasa.org.za
Mobile: 0665813948

Various local languages:
Lindiwe Maredi
Lindiwe@retinasa.org.za
Tel: 0114501181

 Victoria Musimbo
Victoria@retinasa.org.za
Tel: 0114501181

The 2020 annual  Dis-Chem Ride for Sight was held on Sunday, 16th February in Boksburg, Ekurhuleni. Dis-Chem Pharmacies were the naming sponsor with the City of Ekurhuleni hosting the event. They provided excellent traffic control, road surfaces and were proud hosts to the big field of cyclists and supporters at Boksburg City Stadium.

Dusty Day won the 116km Super Classic in a excellent time of 2:34:14. A split second behind was Cape Town’s Julius Jade with David Maree a very close third. 

Dusty’s brother Tyler Day won the event in 2015 making them the only brothers to have won this popular and durable event. 

The ladies event was won by Mauritian Kim le Court De Billot  with Cherise Willeit in second place. The first men’s  tandem pair were Dewald Malan and Kelvin Johnson. The Paralympic Disabled Tandem duo of Gavin Kilpatrick and Mys van der Merwe won the  62 km Disabled Tandem event.

Director of Dis-Chem Pharmacies, Mr Stan Goetsch thanked the City of Ekurhuleni  for hosting the event, the co- sponsors, volunteers, traffic officilas but especially the cyclists who support the event.

The ride has raised over R10 million over the last 32 years to help in the international quest to find treatments for genetic retinal blinding conditions.

Retina South Africa is the only NPO in South Africa funding treatments for genetic vision loss.

Results are available at: www.racetec.co.za

Results from the  116 km Super Classic will once again be a seeding event for the 2021 Cape Town Cycle Tour.

The popular donations draw raised R32 000 from the cyclists and this was matched by the Dis-Chem Foundation.  Surprised winners of the  KTM Revelator road bike valued at R30 000, kindly sponsored by Cycle Lab or 2 x 7 day holidays at Michamvi Sunset Bay holiday resort in Zanzibar valued at R28 000 each have been notified of their good luck. 

The generous lucky draw prizes  ensured good support of the prize giving. Food vendors from Main Events and a popular beer tent ensured a lively atmosphere in the Ride Village.   

The biggest winners however, are the thousands of South Africans losing their vision to inherited retinal blindness as all the proceed of the event go directly to finding treatments for these blinding conditions.

THANK YOU TO ALL WHO CYCLED TO RESTORE 2020 VISION.

Photo Gallery from previous events

Navigating the sometimes complex requirements related to medical aid claims can appear quite daunting, and some people even become so bewildered that they simply give up – and pay up.

There are some simple guidelines that you can follow to overcome these hurdles:

BEFORE YOUR VISIT TO YOUR HEALTH CARE PROVIDER (HCP)

Check whether the HCP is an approved service provider by your specific medical aid. Some schemes provide a list of Designated Service Providers (DSP) and these are usually paid in full. If you elect to consult someone other than a DSP who probably need to pay the difference in the fee

Check whether the HCP that you choose to visit is ‘contracted in’ to medical schemes. If not, the fees may be far higher than the amount covered by your medical aid. You may request medical aid rates if the HCP is ‘contracted out’ and again you would be liable for the costs not covered by your medical aid.

Always ask if discounts are available. Some HCPs are willing to give you a discount for services and/or products if warranted.

THE VISIT TO YOUR HCP:

1.  It is a good idea to check the points above again when you arrive.
2. Ensure that all your details are correct and up to date
3. Find out what fees will be applicable and if you will be responsible for any extras ( – e.g. if you need new spectacles – what is covered – lenses only, or frames, or is there a set amount?)
4. If you receive a prescription for a chronic medication, find out if this is listed on the list of prescribed minimum benefits (PMB) and if these are covered by your scheme. If so, your HCP will need to sign a form to be submitted to the medical aid provider.
5. It is your responsibility to ensure that this form is submitted, although some HCPs do so on your behalf.
6. Be aware that if the first line therapy listed on the PMB fails, your HCP may motivate for a second line choice without incurring a penalty to you.

 AFTER THE VISIT TO YOUR HCP:

1. Ensure that any medical aid claim forms have been submitted.
2. Follow up that all payments are made in accordance with the steps you have taken.
3. If there are discrepancies, immediately consult your medical aid with your findings.

 If necessary, you may contact us at Retina SA to provide you with the necessary forms to follow up on discrepancies.

 Karen 

James Cape- Chairman, Karen Denton, Siphiwe Sibisi and Claudette Medefindt at Retina SA head office.

So you want to get into a clinical trial

The most commonly asked question by patients affected by Inherited Retinal Disorders [IRD] is- How can I get into a clinical trial.

The short answer is – via Retina South Africa and Myretinatracker.org.

This article will tell you why and how.  

Retina South Africa is in negotiation to bring promising but legitimate clinical trials to South Africa. We are doing this with the support of our Scientific and Medical Advisory Board.

What is a clinical trial

A clinical trial is undertaken to test a promising therapy in humans that has shown promise in cellular and animal models. They are approved by the relevant controlling body in a particular country. By the FDA in the USA, the EMA in Europe and the Clinical Trial Section in the Department of Health in South Africa etc.

They are done in 3 phases with strict control and predetermined inclusion/ exclusion criteria for patient selection such as:

• Condition
• Clinical and genetic diagnosis
• Age range
• State of vision
• Various factors set by the trial organiser

Phase 1 is normally conducted on a small number of patients with advanced vision loss and primarily tests the safety of the intervention. The patients need to live in close proximity to the clinic for regular assessment. If no adverse events occur the trial may sometimes be extended to a phase 1/ 2 where dosage and efficacy are also considered. If trial registration bodies are satisfied then the next phase is opened.

Phase 2 trials include a larger number of patients and may include younger patients with less severe vision loss. Again, safety, efficacy and dosage results are presented to trial controllers for permission to proceed to phase 3.

Phase 3 trials involve a larger number or patients and are often multi centered, and may be held in more than one country. It is here that Retina South Africa, with a large cohort of patients with good clinical and genetic diagnosis from all racial groups, is well placed for consideration for inclusion.

A clinical trial is NOT a cure. Some trials may be “blind’ – where some of the patients will not receive the trial medication or intervention but merely a placebo. Some trials are “Double blind” where even the Doctors do not know who is on the medication being tested and who is on placebo. Where an intervention is only given to one eye, as in gene replacement therapy or stem cell therapy, the second untreated eye acts as a control and no placebo control is required. This is known as open label. Where the treatment is given systemically by mouth or injection then a placebo group is usually necessary.

What can patients do

• Join Retina South Africa or ensure that your membership is active
• Get a recent clinical diagnosis- new imaging technologies such as OCT allows the Ophthalmologist a far better view of the retinal structure and he/ she  may be able to refine their diagnosis of your condition. This will save you time and money for the next step- genetic diagnosis.
• A genetic diagnosis is critical as clinical trials need to compare “like with like” and even for therapies that are not gene specific the inclusion of patients with different conditions will skew results.
• Sign-up to the confidential patient registry managed by the Foundation Fighting Blindness USA. Here researchers, looking for patients with specific conditions can, with your permission contact you for research projects
•  www.myretinatracker.org

 Genetic testing

Contact Retina South Africa for more details on genetic testing, but in brief:

• Consult with a Genetic Counsellor, making sure that you have a recent clinical diagnosis and any details of affected family members. Contact details from Retina SA.
• Make arrangements for the genetic test, with Retina South Africa. Some tests are done locally through the National Health Laboratory Services but mostly overseas in partnership with the University of Cape Town. PLEASE do not contact them directly, this has to be done via Retina South Africa.
• Some sponsorship is available for needy families with young children affected by IRD.

How can you help:

Support our fund raising projects:

• Buy or sell Fury Motor car raffle tickets
• Nominate Retina South Africa as a beneficiary on Myschool.co.za
• Join our Circle of Light competition to win a R500 monthly cash prize
• Introduce Retina South Africa to you companies CSR program- Section 18a Tax deduction certificate available on request
• Host a dinner in the dark for friends and family. Macular or RP simulators on request.
• INNOVATE- create a social media campaign to raise funds

CAUTION

Do not be lured to participate in untried interventions. Unscrupulous practitioners are peddling  interventions using Stem Cells harvested from your own body fat.  These un-differentiated cells can be very dangerous and can lead to complete loss of vision. Reputable researchers are  making great strides and the latest successful stem cell intervention for AMD is featured in our current ENews.

For more information:

Email: National@retinasa.org.za
Helpline: 0860595959

Retina South Africa is assisting in the enrolment of South African patients with a clinical diagnosis of Stargardt Disease. A phase 2 trial for a visual disrupting drug will begin shortly. Minimum age of participants is 16 years of age. For more information contact Retina South Africa email: national@retinasa.org.za

Tel: 0114501181

Sadly our annual raffle for a Mazda Motor car has been cancelled. You can still support our fund raising by joining our Circle of Light.

Donate R250 per year for a chance to win a monthly cash prize.  

Email: headoffice@retinasa.org.za