E-News – August 2021

EDITORIAL 

By Claudette Medefindt

TRIBUTE TO JAMES CAPE

Retina South Africa sadly announces the passing of our Chairman James Cape in July 2021. James was Chairman of Retina South Africa for 15 years and will be sorely missed. [Read More Here]


NEW MANAGEMENT COMMITTEE

Retina South Africa is pleased to introduce the newly elected MC:

Chairman: Manny Moodley, Attorney, from Cape Town.
Vice- Chair: Anton van Rooyen [re-elected], Assistive device and technology expert, from Gqeberha.
Treasurer: Jean Bowler [re-elected] professional accountant, Germiston.
Secretary: Claudette Medefindt [re-elected] Patient Counsellor, Benoni.
[Meet the entire Team]


AGM GUEST SPEAKER – JONATHAN ABRO

Jonathan Abro was the guest speaker at our AGM held on Saturday 14th August. Jonathan discussed his life in IT with RP. A copy of his presentation is available on our Youtube channel https://youtu.be/REOdyXPHXE8.
[Click Here for more on the Apps Jonathan discussed] 


PATIENT SERVICES

Much attention is being focussed on supporting our members. This support includes individual counselling, webinars, specialised WhatsApp groups, mentoring by our youth committee and a Youth seminar in Gqeberha.

The WhatsApp groups and webinars are focussed on specific groups of patients e.g. Youth, parents or adults with RD. The youth group leaders have decided to lower the age of patients on the WhatsApp group to 16+. Please contact the office if you would like to be added to an appropriate WhatsApp group.
[Read more here]


WORLD RETINA WEEK 
20 – 26 September 2021

International Theme – Love your eyes.Image of a heart in different colours with the words your eyes

Do you love your eyes?
Are you protecting your vision?
Check the tick boxes and rate yourself here

  Annual Eye Checks
No Smoking
7 Hours Sleep (minimum)
Controlled BP, Cholesterol Abdominal Fat
Controlled, Steady Blood Glucose
Regular Excercise
Healthy Colourful Diet
Limit Screen Time (TV, Computer and devices)
Stress Control
Healthy Social Life

If you rate less than 7 out of 10 you need to learn to love your eyes more!


RESEARCH NEWS

Nanoscope’s Optogentic Gene Therapy

Nanoscope’s Therapeutics announced in June the results of an Optogenetic Gene Therapy trial to restore meaningful vision in 11 Patients blinded by Retinitis Pigmentosa. [Read More]


NAC Attacks Retinitis Pigmentosa

Retinitis Pigmentosa (RP) is a condition caused by many different genetic defects. The common thread is that each of the genetic defects kill “rod” photoreceptors in the retina — which make up 95 percent of the retina’s light sensitive cells — leaving the other 5 percent, the “cones,” virtually untouched. Oxidative stress is a promising area of research being investigated to preserve cone vision. [Read More]


AI and RD

An editorial in the British Journal of Ophthalmology highlights the possible use of Artificial Intelligence to diagnose retinal conditions.

They state that “Traditionally, genotypic diagnosis has been considered ‘nice to have’, but not ‘essential’, with implications usually related to patient prognostication and genetic counselling. However, an accurate genetic diagnosis is now of paramount importance because of rapid advances in potential gene replacement and other therapies for these previously untreatable conditions.”

Prices for genetic testing have drastically reduced. Genetic testing using a Next Generation panel at the university of Cape Town now costs around R11 000, excluding the cost of genetic counselling. Some private genetic counsellors also use American laboratories which do produce faster results. We also have sponsorship from the Mary Oppenheimer and Daughters Trust to fund genetic testing for young people from needy families. Contact the National Office for more details e-mail headoffice@retinasa.org.za or WA 0833065262..


Stargardt Disease Update

Professor Frans Cremers from the Netherlands is the undisputed international expert in Stargardt Disease and ABCA4 gene mutations.

He has just published an open-source paper highlighting the genetic variability in the disease. There are now 2 197 known mutations in this gene – the most common gene in Stargardt Disease.

Prof Cremers gives credit to the work done by Stéphanie Cornelis in the understanding of the complexities of the ABCA4 gene mutations. New work done by her and Esmee Runhart, is to classify all ABCA4 variants found in bi-allelic STGD1 cases into severity classes. This will be important to understand the variability in age of onset, disease progression and the complex inheritance patterns of ABCA4 diseases.


INTERNATIONAL YOUTH GROUP

Alani Ferreira is the South African representative to the International Youth Council. She has been selected to represent South Africa at the Paralympic games for swimming in Tokyo. She is currently in Tokyo and we wish her the very best of luck. Read more about Alani’s first swim at the games https://www.businesslive.co.za/bd/sport/other-sport/2021-08-25-alani-ferreiras-first-swim-in-tokyo-settles-her-nerves/

If you were not able to join the Retina International Youth Conference, please see the recordings here:
Genetic testing: https://www.youtube.com/watch?v=JsLDSdtOLhw
Access and enablement: https://www.youtube.com/watch?v=Md64KH1fFIw
Research and Innovation: https://www.youtube.com/watch?v=BNSyG8jwf30
Remember you can connect with the Retina South Africa Youth Group via the email youth@retinasa.org.za.


HADLEY INSTITUTE

The Hadley Institute offers free training videos in easy to follow and understand step-by-step visual instructions on multiple topics such as *Daily Living, *Adjusting to Vision Loss, *Recreation, *Technology, *Braille and *Working. Use the LEARN tab at the top of the home page.

The Hadley Institute’s mission is to create personalized learning opportunities that empower individuals with vision loss or blindness to thrive – at home, at work, and in their communities.

The free training videos gives easy to follow and understand step-by-step visual instructions on multiple topics such as *Daily Living, *Adjusting to Vision Loss, *Recreation, *Technology, *Braille and *Working. Each one consists of various workshops dealing with aspects of that particular category. Visit the Hadley site and learn how to live your life to its full potential, giving you independence and enriching your life.

Click here : https://hadley.edu/welcome-hadley


THANK YOU FOR YOUR SUPPORT

We would like to thank the members who have paid their membership fees and donated to the research fund. Only those members in good standing were able to access the voting portal to vote for the new MC. For those who cannot afford the R240 per year membership please apply for a fee waiver.

Thank you to the members who have paid membership fees and donated to the research fund. Due to the Covid Pandemic our special events like the Ride for Sight were cancelled for 2021. This has sadly meant that for the first time we have had to reduce our grant to the University of Cape Town for our research projects.

Please remember to nominate Retina SA as a beneficiary on www.myschool.co.za . They will donate to us at NO COST to you. Remember to swipe at participating outlets. Now more than ever we need your support.

RETINA SOUTH AFRICA DISCLAIMER
Information disseminated by Retina South Africa is for information purposes only. Readers must discuss any intervention with their Eye Care practitioner. Information in this E-News does not imply that Retina South Africa endorses any particular therapy, intervention or medication. Retina South Africa assumes no responsibility for the use made of any information provided in this newsletter.

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