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In this episode we explore the remarkable journey of those who dare to participate in groundbreaking medical trials, we delve into a story that embodies courage, uncertainty, and unwavering hope.

Our journey begins when Melani Nel received that life-changing call. The one that would lead her to a clinical trial for Stargardt’s disease right here in South Africa. Emotions swirled within her—disbelief, excitement, hesitation. After all, this was uncharted territory. She had never been part of a clinical trial before, and questions loomed: What impact would it have on her physical and mental well-being?

What if this trial held the key to restoring her vision? Or what if it amounted to nothing more than a hopeful experiment? The possibilities danced in her mind.

At first, a 2-year clinical trial seemed like a very long time, but the months flew by and as she was finishing up with the last tests, she was grateful to have had the opportunity to be part of medical research history. Even though this specific trial didn’t have the outcome she was hoping for, she now knows that there are researchers out there working tirelessly to find a cure for Stargardt’s and several other retinal diseases.

“Medical research isn’t a straight path; it’s a winding journey of discovery, testing, and retesting. And this trial was a beacon—a chance to contribute, to light the way for future generations of young children and teens diagnosed with Stargardt’s.”

Listen on Spotify at https://bit.ly/4c2wDFV

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Welcome to this episode of the podcast “Through the Looking Glass: Unveiling Low Vision with an Optometry Expert

17 – 23 March is World Optometry Week, with the 23rd being World Optometry Day, the focus is on recognising the contributions of optometrists.

In today’s enlightening episode, we have the privilege of hosting Hazel Sacharowitz, a distinguished Optometrist from the Low Vision Care Centre.

Hazel has over 35 years of experience in the field of low vision including lecturing and training of the Optometry students at the University of Johannesburg. She is well known and respected in her field and has presented at numerous local and international conferences. She is a Fellow of the American Academy of Optometry and remains passionate about low vision.

Tune in, listen, and let’s explore the world of low vision together. Remember, you’re not alone—we’re here to support you!

Listen on Spotify at https://bit.ly/3IIvypW or wherever you listen to your podcasts.

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The April edition Volume 53 of the Retina E-News is packed with exciting updates and opportunities for engagement. This month, we spotlight the appointment of our new vice chairperson Mariza Jurgens, who brings a wealth of experience and vision to Retina SA. Celebrate with us the triumph of Dis-Chem Ride for Sight 2024, an event that not only raised awareness but also significant funds for our cause.

Dive into the latest research insights that are illuminating the path to new treatments and understanding. Moreover, discover how you can play an active role in our community through a variety of channels.

There’s something for everyone in this issue, and we invite you to get involved and stay connected with Retina SA.

An audio version of this newsletter is available on our YouTube Channel at https://youtu.be/Ul0NAitC5RI

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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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Today is World Diabetes Day and on the Retinal Realities Podcast, we have a special guest: Gavin van Wyk. Gavin is a SA Diabetes Advocate and a Retina SA Patient Advocate who has been living with Type 1 Diabetes for 35 years. He has experienced many challenges due to his diabetes, such as losing a lower limb and having low vision from Diabetic Retinopathy.

Join Karen and Claudette as they talk to Gavin about his inspiring story of coping with Diabetes and Vision Loss on this podcast. To find out more about Diabetic Retinopathy, you can read this article: https://sweetlife.org.za/what-is-retinopathy/ 
Listen on YouTube https://youtu.be/jw6FyE4L7dA
Listen on Spotify https://bit.ly/3QNSac3 

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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

QR Code to enter Ride for Sight 2024

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.

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World Retina Day will be observed on 30 September 2023.
 
Retina South Africa invites you to join us for a webinar to explore how your vision works, what can go wrong and steps you need to take. You will also hear about the amazing progress researchers are making towards treatments for genetic retinal conditions.
 
This will be a free open access webinar and no pre-registration is required.
Date: 30 September
Time: 14h00 (SAST)
Introduction by Manny Moodley Chair of Retina South Africa and a Director of the Board of Retina International.
Speakers: Karen Denton (Head of Advocacy and Awareness) and Claudette Medefindt (Head of Science).
Join the Zoom meeting at https://zoom.us/j/99220152795.