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In this captivating podcast, we delve into the remarkable journey of Zaheeda Saloojee Jooma, a true embodiment of bravery and determination. Despite being diagnosed with Retinitis Pigmentosa, a condition causing damage to the retina, Zaheeda defied the odds and embarked on a cycling adventure just four weeks ago as she geared up to participate in the Dis-Chem Ride for Sight.
For visually impaired individuals like Zaheeda, everyday tasks pose unique challenges, yet she refuses to let her condition hold her back. With George De Goveia as her volunteer pilot on a tandem bicycle, Zaheeda was ready to conquer the ride, putting her trust in someone else’s hands.
The feeling of pride, bravery, and facing fears head-on is palpable in Zaheeda’s story. It takes immense courage to step out of one’s comfort zone, especially when relying on another person for guidance. Yet, Zaheeda’s determination speaks volumes about her resilience and spirit.
Zaheeda’s story serves as an inspiration to us all, urging us to break barriers and embrace inclusivity in para sports. Let’s join hands in supporting initiatives like the Dis-Chem Ride for Sight which strive to create awareness and opportunities for the visually impaired and blind community.
Should you have a retinal condition or be a family member of a person who has a retinal condition, or a professional who has an interesting or inspiring story to tell please contact Retina SA via our e-mail at headoffice@retinasa.org.za.
Listen on:
Spotify https://bit.ly/496Rw0N
YouTube https://youtu.be/OjMwiwU8uZI
This podcast is supported by Roche Products (Pty) Ltd.
Podcast Disclaimer:
Any information, either audio or visual, contained on this Podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
We are not medical doctors, and you should always contact your physician or other qualified health care professional for any medical advice you need.
The views expressed in this podcast do not reflect the views of Retina South Africa or any of our sponsors.
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On Rare Disease Day 29 February 2024, we stand in solidarity with the 300 million people worldwide living with a rare disease. Rare Disease Day is a globally coordinated movement working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
On this special day, Retina South Africa wants to shed light on a specific rare disease – Leber’s Congenital Amaurosis (LCA).
Leber’s Congenital Amaurosis (LCA) is a rare genetic condition that significantly impacts a person’s vision. It affects the development of the retina, the layer at the back of the eyeball that processes light into images. The condition primarily affects the photoreceptors in the retina, known as rods and cones, which are responsible for night vision and colour vision, respectively.
In individuals with LCA, these photoreceptors malfunction, altering the electrical activity in the retina and thereby affecting vision. The severity of vision loss can vary, with some individuals experiencing low vision, while others may be completely blind. Symptoms often appear in infancy and may include increased sensitivity to light (photophobia), involuntary eye movements (nystagmus), and extreme farsightedness (hyperopia). The condition is progressive, meaning vision loss can worsen over time.
LCA is genetically passed through families by the autosomal recessive pattern of inheritance. In this type of inheritance, both parents are carriers of a single copy of a gene mutation. To date more than 15 genes have been associated with LCA. Gene replacement for the RPE65 form has been in gene replacement clinical trials for many years and will soon become commercially available. See also the information on genetics and research on our website at https://www.retinasa.org.za/research/current-research/. Call Retina South Africa 0860 59 59 59 to find out about genetic testing.
Despite the challenges, the spirit of those affected by LCA and other rare diseases remains unbroken. Their journey is one of resilience, self-advocacy, and hope. Let’s use today to raise awareness, share our stories, and generate change for all those affected by rare diseases.
To learn more about other rare eye diseases, head on over to our Learn page.
Remember, we are stronger together. Let’s continue to support each other and work towards a future where every person living with a rare disease has access to the care and therapies they need.
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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.
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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.
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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
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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.
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The 35th Ride for Sight will be held on February 18th 2024. This will be the 16th 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 5th 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 5th https://bit.ly/3sidVJb
Late entries if available will be at Cycle Lab Lynnwood, Pretoria on Thursday 15th February; Cycle Lab Fourways, Friday 16th February; or Cycle Lab Boksburg, Saturday 17th 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
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EARLY BIRD DISCOUNTS
CYCLING TO RESTORE THE GIFT OF SIGHT
Great news – Discounted entries from Wednesday 15 November to 09h00 Monday 20 November.
To celebrate 35 years of road cycling and to thank YOU, our loyal supporters we are offering substantial discounts in an early bird special from 09h00 on Wednesday 15th November until 09h00 on Monday 20th. Up to R100 Early bird discount on the 116 km event and up to R60 Early bird discount on the 62 km event.
After Wednesday Full price.
Date: Sunday 18 February 2024
Venue: City Stadium Boksburg
Distances: 116km Super Classic presented by Ensure
62km DS24 challenge which includes the Disability Category.
Why pre-enter?
All pre- entries receive: –
- A superior Dis-Chem Goody Bag
- A R50 shopping voucher from Cycle Lab
- The opportunity to enter the donation draw [for only R50] to win a Superb Orbea Gravel Bike valued at R45 000 from Cycle Lab. The Dis-Chem Foundation will match all your donations.
- An opportunity to improve your seeding for the Virgin Active Ride Joburg 947, 2024 AND the Cape Cycle Tour 2025
- A chance to win amazing lucky draw prizes.
But most importantly the opportunity to ride for a cause- that of beating blindness. All proceed go directly to Retina South Africa to assist South Africans going blind due to retinal conditions. They need your help.
Enter at the Biogen stand at the Ride Joburg Expo or online at: https://bit.ly/3sidVJb
Or Scan Barcode below to enter
RECYCLE: The Ride4Sight Team is recruiting people from the Disabled community to participate in cycling to foster independence, strength, and resilience. Please assist by bringing old gear to the Ride Joburg EXPO or to registration.
Calling on all you amazing cyclists to make the “2024 Dis-Chem Ride 4 Sight” the event of change. We need riders to pilot tandems alongside a person with a disability. Would YOU like to take part in making a difference? Please take our quick survey. https://forms.office.com/r/kGfg1R2a8J
For more information visit https://www.retinasa.org.za/events/dis-chem-ride-4-sight/
Thank You
The Dis-Chem Ride for Sight Team
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In 2018, I lost my optical sight. When I lost my sight, I felt incredibly lost, alone and that I had lost my value in life. Everything I had ever done and learned required sight, I felt hopeless, that my life was over.
That was not a good space to be in mentally.
I sought help and where I eventually found it was in Logotherapy.*
Logotherapy is the work of Dr. V.E. Frankl and is known as the third Viennese school of psychotherapy after Sigmund Freud and Adler. Logotherapy is literally a meaning centered form of psychotherapy.
In terms of Logotherapy, man is in search of meaning in all situations and with the ultimate freedom of choice, we get to choose whether and how we respond and for that, we are responsible.
Dr. Frankl was a professor in both neurology and psychiatry and awarded many doctorate degrees in psychology for his work in the human condition.
I am drawn to Dr. V.E. Frankl’s work / Logotherapy because he is one of the few who witnessed and experienced the worst that mankind can do and used what he lived through to help others. He was captured and imprisoned in the second world war death camps where he lost everything. From his times in those bestial places and from his experiences, he came out an incredibly positive teacher, even though he had lost everything.
His teachings helped me and have enabled me to assist others in rediscovering their own true value in life.
Retina South Africa offers free counselling to all our members, contact our Head Office at headoffice@retinasa.org.za.
*Information on Logotherapy – Source positivepsychology.com
Information in this post does not imply that Retina South Africa endorses any particular therapy, intervention or medication. The views expressed are that of the writer and not Retina SA.