Page not found

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

Page not found

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.

Page not found

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.

Page not found

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

Page not found

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.

Page not found

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.
 

Page not found

World Retina Week is observed during the week of 24-30 September, it is observed in more than 40 countries to create awareness about retinal vision loss.

On the Retinal Realities podcast today we have two dedicated women who are active members of Retina South Africa, Claudette Medefindt who has a 40-year history and Sonya Lee Mahabeer who has just recently brought her enthusiasm and energy to the organisation.

They each share their story on how they became involved in Retina South Africa.

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.

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.

Page not found

The global theme for Eye Care Awareness Month of October and World Sight Day [October 12th is Love your eyes].

During World Retina Week, Retina South Africa would like to remind all South Africans to have an eye check to ensure they do not have any hidden visual problems. Claudette Medefindt, Head of Science for Retina South Africa states

“Many serious visual problems such as Glaucoma and Age-Related Macular Degeneration may not be noticed by people until it is almost too late for treatment. Regular eye checks will ensure early detection and effective treatment”.

Retina South Africa would also like to appeal for assistance for young South Africans whose vision loss is at this time, untreatable. Retinal genetic conditions such as Retinitis Pigmentosa, Stargardt Disease and Usher Syndrome, affect around 17 000 South Africans under the age of 35.

Genetic retinal conditions are most frequently diagnosed in families with no previous history of blindness and over 10 million South Africans are estimated to carry a single copy of a gene mutation for a genetic retinal disease. When two carriers marry, their children may inherit a double copy of the gene mutation and thus the disease.

Global research into gene specific therapies, pharmaceutical interventions, antioxidants, Optogenetics and Stem Cells is making tremendous progress to advance these interventions to registered treatments.  We need to ensure that our young people are not left behind.

Medefindt added

“The first step towards the promise of a sighted future for these young people is a genetic diagnosis, to identify those who are eligible for trials and imminent therapies. These tests are expensive and are not available at State Hospitals and nor are they reimbursed by medical funders. At R10 000 many families cannot afford this vital test. If we can save the sight of these young people, we can save 1 million blind years.”

If you would like to assist please donate through Retina South Africa’s website www.retinasa.org.za or nominate them as your beneficiary at www.myschool.co.za

Page not found

“At least 2.2 billion people have vision impairment or blindness, of which over 1 billion cases could have been prevented or have yet to be addressed”. World Health Organisation (WHO).

The South African Optometric Society (SAOA) BIG WALK FOR SIGHT

World Sight Day is on Thursday, 12th October 2023. The aim of the SAOA Big Walk for Sight is to focus attention on the importance of eye care in the workplace. Together, we will encourage employers to make eye health initiatives standard practice and promote eye health habits that will benefit the well-being, safety, and productivity of millions of employees.

The first step, literally, is prioritising your own eye health, and we invite employers and employees, sighted and visually impaired, to pledge to #LoveYourEyes and participate in the SAOA Big Walk for Sight.

Meerendal Wine Estate is a magnificent venue with picturesque walking trails, well known as a bikers and hikers paradise, and which has hosted large events such as KFM Day.

VENUE & TIME

The Big Walk will take place from 10:00-14:00 at Meerendal Wine Estate, Visserhok Rd, Durbanville, Cape Town

GPS coordinates: 33.7990° S, 18.6240° E

The Big Walk is a sobering reminder that the beauty of our surroundings, such as the Meerendal walking trail, is in the eyes of the beholders, but only if the beholders have healthy vision.

DONATIONS
Donations can be made, on a voluntary basis to:

Retina SA: http://retinasa.org.za/contact-retinasa/

http://retinasa.org.za/donate-now/

SA Guide Dogs: https://guidedog.org.za/

https://guidedog.org.za/support-us/

QUERIES

Should you have any queries, or require additional information, contact the SAOA office on 011 805 4517 during office hours or marketing@saoa.co.za