Annual General Meeting Meeting– 22 August 2020
The 1st National AGM held under the new constitution took place via Zoom webinar on Saturday 22 August. A strong, young, diverse committee was voted into office. Committee Members: Alani Ferreira, Anoop Narotam, Kgosietsile Mmoloke, Manny Moodley, Michele MacFarlane and Samantha Daniels.
Kgosi, Alani, Anoop and Samantha will focus on Youth development.
James Cape was re-elected as Chairman, Anton Van Rooyen was re- elected Vice Chairman; Jean Bowler as Treasurer and Claudette Medefindt as Secretary.
This followed the AGM and 5 excellent speakers’ spoke on the various aspects of retinal vision loss.
They were: Hazel Sacharowitz, Low Vision Optometrist, Belinda Leibowitz, Low Vision OT, Tracey Tingle, James Cape (Chairman) and Claudette Medefindt (Science Director).
Hazel is an optometrist with a special interest in the field of low vision. She is currently in private practice at the Low Vision Care Centre, Heathway Square, Blackheath, Randburg. Prior to this she lectured low vision to final year students at the Optometry Department at the Technikon Witwatersrand and University of Johannesburg for more than 30 years. Hazel has presented at both national and international conferences, as well as local support groups and workshop sessions on various aspects relating to low vision care.
To watch the video Click Here
Belinda has worked with the visually impaired for the past 33 years. She started working in the field at Civilian Blind in 1987. She worked as a supervisor with students at the University of Johannesburg Dept of Optometry for 23 years. She has worked in private practice for the past 7 years.
To watch the video Click Here
James has been Chairman of Retina South Africa for the past 14 years. James retired from a long and successful career in banking in 2016. He is an expert in the use of assistive devices and Apps that enabled him to hold a senior position in the Corporate banking sector for more 40 years. James has Cone Rod Dystrophy.
To watch the video Click Here
Claudette Medefindt Head of Science for Retina South Africa. Patient Counsellor and advocate for accessible treatments for retinal degeneration.
To watch the video Click Here
The Virtual International Youth Conference was held on 25 and 26 August with over 120 attendees from all over the world. The talks can be seen on the Retina International website.
The talk on research by Dr Ben Shaberman of the USA is an absolute must see.
To watch the talks Click Here
Four of the newly elected members of the Management Committee (Kgosi, Alani, Anoop and Samantha) are taking on the responsibility of organising the youth portfolio. This is in line with the Retina International focus on youth. The Team have outlined their Vision and Mission statements.
To create a platform to support and inspire South African youth with inherited retinal disorders (IRD) to overcome and adapt to their circumstances to ultimately become the best version of themselves.
We work to create a platform where the youth are guided and informed to make a positive path for each individual. Through the guidance and experience of the team we aim to create a supportive environment.
If you would like to join email the head office.
Stay tuned to our Social Media Pages to learn more about the team members.
CRACKING THE RETINAL CODE
Dr Sheila Nirenberg has spent the last five years deciphering the code that the photoreceptors use to communicate with the brain.
Bionic Sight has dosed the first patient in Clinical Trial for Optogenetic Therapy for patients with advanced vision loss from Retinitis Pigmentosa (RP). The 20-participant trial will continue dosing patients in the second half of 2020. The study is taking place at Ophthalmic Consultants of Long Island.
Bionic Sight’s approach involves two components:
- An optogenetic treatment that bestows light sensitivity to retinal ganglion cells which survive after photoreceptors are lost to an advanced retinal disease like RP,
- A device, worn like a pair of glasses, that captures the scene a person is looking at and generates vision-enabling code, which is sent through ganglion cells and optic nerve to the brain.
The Bionic Sight device produces electrical impulses, similar to those produced by photoreceptors. Bionic Sight believes that generation of more natural retinal code will lead to better vision for patients than other optogenetic alternatives.
AGTC, a developer of gene therapies for retinal degenerative diseases and other conditions, developed the optogenetic gene therapy being used to make ganglion cells light-sensitive in the Bionic Sight clinical trial.
The video titled “Cracking the Code to Beat Blindness” provides more details about Bionic Sight’s technology.
Tap or click on this hyperlink or Copy and paste the following into the URL address bar in your browser:https://www.nbcnews.com/mach/video/cracking-the-code-to-treat-blindness-1385480259560
Link for Bionic Sight’s website: https://www.bionicsightllc.com/
MeiraGTx and Janssen Pharmaceuticals, Inc. are jointly developing agene therapy for the RPGR gene in X linked RP. This is a phase ½ clinical trial and initial results were presented at the American Society of Retina Specialists.
Meira GTX RPGR trial.
The ongoing Phase 1/2 MGT009 clinical trial consists of three phases: dose-escalation, dose-confirmation, and dose-expansion. Each patient was treated with subretinal delivery of AAV-RPGR in the eye that was more affected at baseline. The patient’s other eye served as an untreated control. The primary endpoint of the trial is safety, with secondary endpoints assessing changes in visual function at pre-specified timepoints post-treatment. Baseline values were determined in triplicate.
At six months, significant improvement in retinal sensitivity was demonstrated in patients treated with low and intermediate dose AAV-RPGR.
Improvement was evident at first post-treatment perimetry assessments at three months, with improvements generally sustained or increased at six months. Significant differences were observed in retinal sensitivity between treated and untreated eyes over time. Based on the robust safety and efficacy signals observed in the dose escalation portion of the study, the low and intermediate doses were selected for use in the ongoing randomized, controlled dose-expansion phase of the trial.
“XLRP is characterized by early-onset visual field loss, with most patients progressing to blindness and associated loss of independence by young adulthood,” said Professor Michel Michaelides, MGT009 trial investigator, Consultant Ophthalmologist, Moorfields Eye Hospital and Professor of Ophthalmology, University College London. “Six-month data demonstrate AAV-RPGR may improve visual function in XLRP patients. Initial data also suggest treatment with AAV-RPGR has the potential to stabilize or slow progressive vision loss. These results support AAV-RPGR as an important advancement in the treatment of XLRP, for which there is no currently available therapeutic option.”
Based on the encouraging safety and efficacy data demonstrated in the MGT009 trial to date, MeiraGTx and Janssen expect to advance AAV-RPGR into the Phase 3 Lumeos clinical trial for the treatment of patients with XLRP caused by mutations in RPGR gene.
4D Molecular Therapeutics Announces First Patient Dosed in Phase 1/2 Clinical Trial of 4D-125 by Intravitreal Injection for the Treatment of X-Linked Retinitis Pigmentosa.
4D-125 is an Adeno Associated Virus gene therapy designed to deliver a functional copy of the RPGR gene to photoreceptors in the retina. This is delivered by an injection into the vitreous of the eye which is less invasive than the more common injection into the Pigment Epithelial cell.
Read More Here
Gene therapy development for Stargardt disease has been challenging because adeno-associated viruses (AAVs), the human-engineered viruses currently used for emerging retinal-disease gene therapies, don’t have the capacity for the ABCA4 gene which is relatively large. AGTC is trying a novel dual virus approach to solve this problem.
AGTC’s emerging Stargardt disease gene therapy uses dual-vector AAV technology, which delivers the ABCA4 gene in two halves. When the halves are delivered to the recipient’s photoreceptors, they recombine to produce a whole, fully functional ABCA4 gene.
If successful, this could pave the way for delivery of other genes that are currently too large to deliver using the common AAV-based gene-augmentation technology.
The dual-vector delivery system is based on technology developed by William Hauswirth, PhD, University of Florida, one of the foremost developers of retinal-disease gene therapies, and his colleagues at the University of British Columbia. Their dual-vector AAV successfully and safely delivered functional ABCA4 genes to large animals. The proof-of-concept work is an important milestone for advancing the emerging treatment into a clinical trial.
“AGTC’s announcement of their Stargardt disease gene therapy development and the success of Dr. Hauswirth’s large-animal study for ABCA4 gene delivery are exciting advancements for people with Stargardt disease,” says Brian Mansfield, PhD, executive vice president of research and interim Chief Scientific Officer at the Foundation Fighting Blindness. “We are very pleased to see this potential treatment move toward a human study. If successful, this could pave the way for delivery of other genes that are currently too large to deliver using the common AAV-based gene-augmentation technology.
An interesting article from the University of Tennessee looks at the “Playthings of the Mind” the visual hallucinations that affect an estimated 10% of people with severe retinal vision loss.
Charles Bonnet Syndrome (CBS) is a condition of the visually impaired, in which visual hallucinations of geometric patterns, people and objects appear within the visual field. Most people with CBS are older adults but the condition can occur at any age. Many professionals believe it is caused by incomplete messages from the damaged retina being wrongly interpreted by the brain – much like the phantom limb syndrome. The condition is not treatable but meditation, breathing and relaxation techniques may help alleviate the severity and frequency of the hallucinations. Fortunately they do not usually last longer than a few months. Although there has recently been increasing awareness about the condition, many in the fields of medicine, optometry, and social work have not heard of it.
If you would like to speak to a Retina South Africa counsellor about CBS please contact us.
A report published in the American Journal of Medicine showed that Levodopa, a drug that is commonly used to treat Parkinsons Disease may boost Anti VEGF treatments for Wet AMD.
A small trial, showed reduced anti VEGF treatments were needed to maintain vision when Levodopa was added to the treatment schedule in Wet AMD.
There is a comprehensive list of clinical trials that are funded by the Foundation Fighting blindness on their excellent website.
These conditions include:
Achromatopsia; AMD (Dry); Choroideremia; LCA; RP; Usher; Retinoschisis; X-linked RP.
AMD-dry; RP; Usher; Stargardt.
MOLECULES, PROTEINS, AONS:
AMD-dry; LCA; RP; Stargardt disease; Usher syndrome.
For a comprehensive list of conditions that are in clinical trials see the Foundation Fighting Blindness website – www.blindness.org
Dear Member and Parents of Members
Professor Steven Rose from the Foundation Fighting Blindness USA (FFB) urges patients who have a genetic result to register with My Retina Tracker. This is a confidential online portal run by the FFB that shields your identity but allows researchers to identify potential patients for clinical trials. If you fit the criteria for the trial, your details are not automatically released and My Retina Tracker will inform you if a researcher wants to connect. Its then your choice to allow the connection or not.
If you are unsure whether Retina South Africa has a copy of your genetic result please contact us.
Interested? Register on www.myretinatracker.org
Anton van Rooyen our resident Techno guru evaluates the Seeing AI and Envision Apps.
SEEING AI OR ENVISION?
Which is the best?
Very often you will have opposing opinions about such issues, depending on cost, user friendliness and familiarity with the app as well as certain functions that are important to one person but maybe not to someone else. An overview of what these artificial intelligence apps can do for you might help. They are both what I call ‘Identifiers’, meaning they can read short text such as business cards and labels, scan larger text documents and read them to you, identify currency, recognize people and products, identify colours and various other functions.
Both apps are available on the Apple iOS and the Android operating systems which means that they are available on most popular smart devices.
The Seeing AI is a free app whereas the Envision AI app is a paid subscription.
- Seeing’s ‘Short Text’ and Envision’s ‘Reading Instantly’ is much the same and is very useful to read business cards, menu’s and product names.
- The ‘Document’ reader on Envision seemed easier to use and was more accurate than the same function in Seeing AI, but in fairness one must give the benefit of the doubt to the user’s familiarity and ability with using the function. Envision also has more options in the ‘Document’ reader such as multiple pages, pdf and scanned images. Seeing AI has a function for reading ‘Handwriting’ and does this quite well, though when scanning and reading it as a document, Envision does better.
- Both apps were good and accurately described a product from it’s Barcode.
- Though, done in different ways, both apps could find people and name them successfully.
- Only Seeing AI has a currency identifier, but it does not include the South African Rand.
- The ‘Scene Describer’ and the ‘Colour Detector ‘ is much the same on both apps but neither are very good nor accurate..
- Seeing AI has a ‘Light detector’ function, which is great for you to know when Eskom has switched the lights back on!
- Envision has a limited’ Object Finder’ which is not as good as Tap Tap See’s version.
If your need is primarily an app that can read text to you with a couple of other useful functions, Envision is probably the one but if not, go for Seeing AI, and it is free!
Feeling overwhelmed by the new technology? We are all having to learn many new skills in this new reality.
This comprehensive tutorial on ZOOM is written by a blind user and you will find it very useful.
Click Here to access the Zoom Tutorial
Karen Denton (AMD Ambassador)
While chatting to visually impaired people telephonically during the lockdown I have been struck by a few amazing revelations.
The lockdown has not only brought negatives to our lives, there are many, many positives.
First, the growth of cyber connections. This seems obvious, but just think about it. Technology allows us to be in contact with people, friends, family members daily rather than weekly, monthly, sporadically. Suddenly we have the time to reach out, to chat, to share. And many free apps make this possible in a way that was unthinkable before.
In fact, the further we are apart in this lockdown, the closer we are.
Secondly, work productivity is up for many. No more long hours commuting to and from our offices. We can literally ‘hit the ground running’ on a daily basis. What a boon that Is!
What about shopping? Many report a monthly reduction in spending. Why? Well, for those who use online shopping there is the petrol saving, parking saving, and a dramatic reduction in impulse buying. This adds up … and adds up. Similarly, fewer restaurant visits add to this saving.
And then what about learning? Many professionals have traditionally been lucky to attend one or two conferences, congresses, symposia per year. Suddenly these are available regularly, even weekly via online webinars. The thousands enjoying these demonstrate how necessary this step has truly been.
And this applies to non-professionals as well. People with special interests can attend meetings, webinars and listen to podcasts that are topical, up to date, and that provide information they may never have had access to before.
So, when you add this up, it is clear that by forcing us further apart, the lockdown has brought us closer than ever.
THANK YOU BAUSCH AND LOMB FOR YOUR CONTINUED SUPPORT OF OUR WORK.
Ophthalmologists’ No.1 prescribed eye health supplement1
Reference: 1. Impact Rx. Scripted data – December 2017.
Proprietary name and dosage from: Ocuvite Complete soft gel capsules. Composition: Each soft gel capsule contains fish oil rich in DHA 507,7 mg: of which DHA 180 mg and total omega-3 300 mg, lutein 5 mg, zeaxanthin 1 mg, vitamin C 90mg, vitamin E 15 mg, zinc 7,5 mg.
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The production and distribution of this newsletter is sponsored by Bausch and Lomb via an unconditional educational grant to Retina South Africa. The views and comments expressed in the newsletter do not necessarily reflect the views of Bausch and Lomb.
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 ENews 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.