A landmark amendment to the National Transport Act was signed, effective from December 3, 2024, introducing a standardized National Disability Parking Disc across South Africa. This new legislation is a game-changer for persons with visual impairments, as it explicitly includes all individuals with disabilities requiring parking discs—not just those with mobility impairments. For Retina South Africa members, this opens up greater access to accessible parking, fostering independence and ease of travel. Previously, inconsistent municipal parking discs created confusion, with some visually impaired individuals facing challenges in securing recognition.

The new national disc, issued through local traffic departments, ensures uniformity and clarity. It’s tied to the individual, not a specific vehicle, offering flexibility for those who drive or are passengers. The wider parking bays, often within 50 meters of accessible entrances, make navigation safer and more convenient for those with visual impairments. While the act marks a significant step toward inclusivity, the specific criteria for applying—such as required documentation—are still being finalized.

Retina South Africa will continue monitoring developments to ensure equal availability of disability parking discs for our members with visual impairments who need them. Stay tuned for updates as we advocate for a seamless rollout!

Welcome back to another inspiring episode of Retinal Realities, the podcast that brings you stories of strength, insight, and perseverance from the world of vision loss.

Today, we pause to honour International Yoga Day, celebrated globally on June 21st — a day that highlights yoga’s power to unite body, mind, and spirit. Rooted in ancient Indian philosophy, yoga transcends boundaries, offering inner peace and balance in a world full of noise.

In this special episode, we’re joined by an extraordinary guest: Claudette Medefindt, the Secretary of Retina South Africa and a seasoned yoga teacher who radiates calm, wisdom, and strength. Claudette’s journey is a beautiful blend of resilience and mindfulness — one that bridges her passion for yoga with her experience of living with vision loss.

Together, we’ll explore how yoga can be a healing force — not just physically, but emotionally and spiritually too — and learn a few simple practices you can begin using right away, wherever you are.

So, settle in, take a deep breath… and let’s dive into this powerful conversation with Claudette.

Namaste!

Listen on Spotify: https://bit.ly/3G7tKJl

Listen on YouTube: https://bit.ly/4lfkQIF

Thank you to Roche Products (Pty) Ltd for sponsoring this wonderful series of Retinal Realities podcasts.

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.

The June Edition of Out of Sight is Here!

Dear friends and supporters,

As the cooler days settle in, we’re excited to share the latest edition of Out of Sight, Retina South Africa’s official newsletter — packed with inspiring updates, exciting opportunities, and news you don’t want to miss!

Annual General Meeting

Save the Date: Our Annual General Meeting is happening on 19 July — an important moment to celebrate progress and shape the future together. More details coming soon!

WIN a Dream Holiday!

We’re launching a raffle to Zanzibar — your chance to support a life-changing cause and stand a chance to escape to paradise. Visit our website for more info.

Whether you’re living with a retinal condition or walking the journey alongside a loved one, this issue is for you.

Click the link to read the full newsletter and stay connected: Out of Sight – June 2025

In today’s screen-heavy, fast-paced world, our eyes are under constant strain—from digital glare and artificial lighting to environmental stressors and aging. Nurture Vision was founded on the principle that proactive, science-backed nutritional support can make a meaningful difference in preserving and protecting sight. Their focus is twofold: safeguarding the long-term health of the retina, particularly the macula, and addressing the widespread issue of dry, irritated eyes affecting millions of South Africans daily.

Their flagship Triple Carotenoid Eye Supplement combines lutein, zeaxanthin, and meso-zeaxanthin—three macular pigments clinically shown to enhance visual performance, improve contrast sensitivity, and protect the retina from harmful blue light and oxidative damage. These nutrients are concentrated in the macula, the central region of the retina responsible for detailed and colour vision. Their formulation reflects the latest science in macular nutrition, helping safeguard vision for the long term—especially in individuals at risk of age-related macular degeneration (AMD) or high screen exposure.

Complementing this, their specialized Dry Eye Supplement targets the root causes of tear film instability and ocular surface inflammation. Enriched with key antioxidants, anti-inflammatory nutrients, and botanicals, this formula is designed to relieve symptoms, improve tear quality, and restore eye comfort from the inside out. It supports individuals experiencing chronic dryness, digital eye strain, or environmental irritation—offering internal nourishment to soothe and stabilize the ocular surface.

To further support both eye and systemic wellness, they also offer a high-quality Omega-3 Supplement rich in EPA and DHA—long-chain fatty acids well-documented for their anti-inflammatory properties. While omega-3s are widely known for their cardiovascular and cognitive benefits, they are also essential for maintaining healthy meibomian gland function and improving tear composition. This supplement serves as a valuable addition to any eye care regimen, especially for individuals with inflammatory dry eye or looking to optimize their general wellness alongside visual health.

Together, these products reflect Nurture Vision’s holistic approach to eye wellness—bridging science, prevention, and everyday comfort for clearer, healthier vision.”

This is a brand-new launch, and while the products aren’t available just yet, they’ll be ready in just a couple of weeks. You’ll be able to find them online and at selected pharmacies. We’ll share all the details with you as soon as they’re available — it won’t be long now, and we think you’ll find it worth the wait!

WHY:
At Retina South Africa, we believe that everyone affected by inherited retinal conditions deserves access to cutting-edge treatment and the chance to protect their vision. Today, there is exciting news for our community — and particularly for families affected by Stargardt Disease Type 1. A promising new treatment is on the horizon, and we want our members to be ready.

HOW:
Belite Bio, a U.S.-based pharmaceutical company, is leading the Phase 3 DRAGON clinical trial for a drug called Tinlarebant. This daily capsule is designed to slow the build-up of lipofuscin, a toxic waste product that damages retinal cells in people with Stargardt Disease Type 1. During the 2-year study, young participants experienced no loss of vision and showed maintenance of healthy retinal tissue — a remarkable achievement.

Because of its potential impact, the U.S. FDA has granted Breakthrough Therapy Designation for Tinlarebant, meaning it will receive expedited review for registration. The trial is expected to conclude in December 2025, and if successful, the treatment could become available within just a few years.

To ensure that South African patients are eligible for this ground-breaking therapy, Retina South Africa, in partnership with the Department of Human Genetics at the University of Cape Town, is offering a once-off 40% discount on the cost of comprehensive retinal genetic testing — but only until August 2025.

WHAT YOU CAN DO:
If you are a member of Retina South Africa and believe you may have Stargardt Disease or another inherited retinal condition, now is the time to act:

🔹 Get tested: A total fee of R6000 will cover your DNA testing to help identify mutations in the ABCA4 gene(linked to Stargardt Disease) or other retinal-related genes.
🔹 This offer is open to adolescents aged 12–20 who may qualify for future treatments. If you’re 25 or older, we recommend discussing the relevance of genetic results with your eye specialist.
🔹 The testing uses a comprehensive retinal panel, so members with other conditions may also qualify — please confirm with us first.
🔹 You’ll also need to book a consultation with a genetic counsellor in your area (± R1600, often covered by medical aids).

✅ NEXT STEPS:

1. Email Denise at Denise@retinasa.org.za – she’ll refer you to a qualified genetic counsellor.
2. Once approved, she’ll email you an invoice for the R6000 genetic testing fee.
3. Pay the invoice, and you’ll receive a saliva sample kit.
4. Return your completed kit to Retina South Africa by mid-August 2025.

Let’s make sure our South African community is not left behind in this era of advancing treatments. Even if you’re not eligible for this trial, having your genetic diagnosis opens doors to future treatments, clinical trials, and personalised care.

We are here to help. 

For any questions or to confirm your eligibility, please reach out to us. Together, we can prepare for a brighter future.

Retina South Africa excited to share an important opportunity for you to make a difference in the lives of persons with disabilities across Africa and beyond. On June 12, 2025, the World Health Organization (WHO) will host stakeholder engagement sessions in Africa to discuss the proposed updates to the Priority Assistive Products List (APL). This is your chance to contribute to a global effort to ensure that assistive technologies—vital tools like hearing aids, wheelchairs, communication aids, and more—are accessible, inclusive, and responsive to the needs of our communities.

As a member of the WHO’s Technical Advisory Group (TAG), our Chairperson, Mariza Jurgens, recently had the privilege of joining experts in Geneva to review and expand the proposed APL. Their discussions focused on making the list more inclusive, ensuring it reflects the diverse needs of persons with disabilities worldwide. The APL serves as a critical guideline for governments, outlining the assistive devices they should prioritize to remove barriers and empower individuals with disabilities.

By updating this list, they aim to enhance access to life-changing technologies, from physical aids like prosthetic limbs to digital solutions like smartphone accessibility features.

Why Your Voice Matters
The upcoming stakeholder engagement sessions are a unique opportunity for you—advocates, users, caregivers, and community members—to share your insights and experiences. Your feedback will help shape the final APL, ensuring it addresses real-world challenges and promotes equity in access to assistive technologies. Whether you’re a person with a disability, a family member, or a professional in the field, your perspective is invaluable.

How to Get Involved
The WHO is hosting open online consultations in June 2025, including the session on June 12 focused on Africa. We encourage you to register and participate in these discussions. Share your thoughts on which assistive products are most needed, how they can be made more accessible, and what barriers still need to be addressed in your communities. You can find more details and register for the sessions through the WHO’s official channels (Register here for the African Region consultation: https://who.zoom.us/meeting/register/ZC2Qf0UmRaivaF8jHEytwQ

Learn more about the APL open consultations here: Assistive Products Priority List (APL) open consultations).

Why This Matters
Assistive technologies empower individuals to live independently, participate in society, and achieve their full potential. The APL is more than a list—it’s a roadmap for governments to prioritize funding, procurement, and policies that break down barriers for persons with disabilities. By expanding the APL to be more inclusive, they are advocating for solutions that meet the needs of diverse populations, including those in low-resource settings across Africa.

A Call to Action
We urge you to join these stakeholder sessions and lend your voice to this transformative process. Together, we can ensure that the updated APL reflects the realities and aspirations of our communities. Let’s work toward a world where assistive technologies are not a luxury but a fundamental right for all who need them.

For more information on the APL and the stakeholder engagement sessions, keep an eye on WHO’s announcements or contact Retina SA directly for guidance on how to participate. Let’s make inclusion a reality!

As a young adult, my world began to fade before I had fully seen it. The subtle yet persistent loss of vision became a constant in my life — an invisible shadow that followed me through my studies, through friendships, and through moments that were meant to define the person I was becoming. For over a decade, I sought answers. Specialist after specialist, doctor after doctor, yet clarity — both literal and medical — continued to elude me. It was only after years of uncertainty that I was finally diagnosed with Stargardt’s disease.

At the time, I was studying towards my LLB degree, determined to carve a future for myself as an attorney. But the diagnosis shook my foundation. I believed, then, that my life was over before it had even begun. The emotional toll of having to appear fine — while internally crumbling — was one of the most isolating experiences I’ve ever known. How do you explain to people that you’re visually impaired when you still walk unaided, when you still smile, when they can’t see the daily battle you’re fighting?

I struggled mentally, emotionally, spiritually, and physically. My confidence dissolved into unworthiness, and I questioned whether there was any space for someone like me in a world that prizes perfection. But as life so often does, it introduced me to a beacon of hope: Claudette Medefindt from Retina South Africa. That single phone call changed the course of my journey. Her empathy, wisdom, and unwavering commitment became my guide. In her, and in Retina South Africa, I found not only understanding — but empowerment.

Retina South Africa helped me find purpose in the pain. Through their work, I discovered that education and awareness are vital tools in breaking the silence surrounding visual impairments. I began to see beyond my diagnosis — to understand that while my sight may be limited, my vision for impact, justice, equality and empathy remains boundless.

This journey has not been easy. I have faced prejudice in professional spaces, fought for basic accommodations, and had to continuously prove that my abilities extend far beyond what others could perceive. Yet through these challenges, I have found my voice — not just as a legal professional, but as a disability rights advocate.

I have since created the term “Corporate Compassion” — a call to action for workplaces to build inclusive forums, educate teams, and foster environments that do not merely accommodate disability but embrace differences and practices transformation. Disability does not mark the end of a meaningful life — it marks the beginning of a “differently-abled” one.

To those walking this path: I want you to know that you are not alone. In the moments when everything feels blurry and hope seems dim, there is a way forward. It begins with understanding your condition, seeking the right support, and believing in your inherent worth. My own pillars have been:

1. Education — Know the facts. It gives clarity when the world does not.
2. Mental Resilience — Some days will be hard, but your strength is born in the dark.
3. Community — Whether through friends, family, or Retina South Africa — find your circle of strength.
4. Find meaning in your journey – it is in giving and contributing to anything meaningful to you, where you discover your worth, ignite your passion, a trust in a divine source greater than your comprehension that offers unwavering grace.

Today, I stand not only as Deputy Chair of this remarkable foundation, but as someone living proof that adversity can birth advocacy. That blurred vision can sharpen purpose. And that with the right support, belief, and compassion — there truly is a vision beyond sight.