E-News January 2020

Dis-Chem Ride for Sight 16 February 2020

Dis-Chem Ride for Sight 2020 

CYCLE TO RESTORE 2020 vision is the motto for the Dis-Chem Ride for Sight this year. This event is proudly hosted by the City of Ekurhuleni and will be held on February 16th at Boksburg City Stadium.

Enter at www.cycleevents.co.za.

There will be a special prize for Disabled Tandems on the 62km event. Email head office for more details or call our helpline 0860595959.

 

One Vision at Retina South Africa

ONE VISION 

Retina South Africa has completed the changes to unite us under one, strong national constitution. The branches will now operate as offices but will offer area focused patient services. The changes will encourage more members to start small community projects in their area without the onerous establishment of a branch. Full support will be given to anyone who would like to implement this. Call us.

Changes to email addresses have been made but old addresses will still operate for some time. New addresses are:

National- headoffice@retinasa.org.za 

Port Elizabeth-

pe.office@retinasa.org.za

Cape Town-

ct.office@retinasa.org.za

Science-

claudette@retinasa.org.za

For all other staff and office bearers use their first name @retinsa.org.za.

The online voting system is being tested and call for nominations will be sent out soon. Remember to pay your annual membership fees or to complete a fee waiver application if you would like to vote or be nominated for office.

All fees should be paid into the Head Office account: Retina South Africa, Standard Bank, Bedfordview Branch code 018305, Account No. 020312164

Please add your name and province so that your fees can be allocated to services in your area.

The Gauteng and North Gauteng branches have been incorporated into head office but both have active social workers and other member services.

We need active support from every member to ensure that more clinical trials and research initiatives are brought to South Africa.

2020 is our 40th anniversary and we are planning some exciting events in September during World Retina Week to mark this occasion. Please consider organizing an event in your community. Call us for advice.

 

Stargardt Clinical Trial update

STARGARDT CLINICAL TRIAL UPDATE  

Recruitment for this phase 2 clinical trial has been extended to mid- February. If you are over the age of 16 and have a clinical diagnosis of Stargardt Disease, please call our head office urgently.

This trial is to test if the visual cycle disruptor drug will slow the rate of degeneration in Stargardt patients.  From the 70 patients that were initially recruited 10 have already made it through to the first stage of the trial.

 

Understanding Retinal Science

UNDERSTANDING RETINAL SCIENCE

CLINICAL TRIALS

Clinical trials are designed to test a drug or other intervention that shows promise of treating a disease in patients. The trial organizer has to submit his trial plan, including what will be measured to judge the success of the trial to National Government Departments that oversee all clinical trials. These trials are closely monitored to protect patients. They are normally in 3 phases. Phase 1 is usually a very small group of patients who all live close to the participating clinic and is generally for safety purposes only. If this is successful, phase 2 will be authorized and will include more patients and possibly various dosing levels. Again if successful phase 3 will be authorized and will include greater numbers of patients. Some trials are masked, or “blind’ indicating that some patients will receive a placebo, an inactive drug. In retinal conditions that are generally rare, phase 3 trials often go out to many countries to find the large number of patients required to prove the intervention works. This is why Retina South Africa is encouraging all patients to have an accurate clinical diagnosis and a genetic diagnosis as this is required to be eligible for a multi-centered phase 3 clinical trial for your particular condition.

 

 

Research News

GENE THERAPY

Applied Genetic Technologies Corporation has reported favorable safety outcomes and evidence of efficacy in its Phase 1/2 gene therapy clinical trial for X-linked retinitis pigmentosa (XLRP) caused by mutations in the RPGR gene. 17 Patients were treated with nine treated centrally and eight treated peripherally. The nine patients treated centrally showed stable or improved visual acuity and four of these also showed improvements in visual sensitivity. The eight patients treated peripherally showed stable visual function through six months. The company is enrolling additional Phase 1/2 patients in the first quarter of 2020 and plans to launch a Phase 3 trial by the end of 2020.

AGTC also has Phase 1/2 gene therapy clinical trials underway for achromatopsia (CNGA3 and CNGB3 mutations). The company has gene therapy preclinical programs for dry age-related macular degeneration and Stargardt disease. It also has a preclinical program for an optogenetic therapy. AGTC used the Foundation Fighting Blindness- My Retina Tracker patient registry and genetic testing study to identify and recruit patients for the XLRP and achromatopsia studies.

FIRST PATIENT RECEIVES ProQR’s AON THERAPY

The Aurora Phase 1/ 2 trial to treat Dominant RP [ADRP] in the Rhodopsin gene was announced in December. This therapy [QR 1123] is for the P23 mutation in the gene which is a relatively prevalent mutation in ADRP. The therapy uses small pieces of genetic material called antisense oligonucleotides [AON] to mask the genetic message of the faulty gene. A total of 35 patients will be enrolled at the Retina Foundation of the Southwest in Dallas and Vitreoretinal Associates in Gainesville, Florida. ProQR has other programs running to treat LCA 10 caused by murtation in the CEP290 gene and for Usher Syndrome in the USH@A gene.

 

Macular Degeneration

The new Anti- VEGF drug to treat wet AMD developed by Novartis has been approved in the EU and the USA. The drug BEOVU [ brolucizumab] will only need to be given every 12 weeks and has proved to be as effective as other existing licensed drugs.

 

Cortical Implant

Bypassing the Retina

Second Sight Medical Products announced its plan to accelerate the development and commercialization of its Orion Visual Cortical Prosthesis System. Orion holds the potential to provide useful artificial vision to individuals blind from many causes, including glaucoma, eye injury, diabetic retinopathy, optic nerve disease or injury, and retinitis pigmentosa. Although still in early development the company is very excited about their first clinical trial which included a South African patient who had severe retinal damage due to an accident. Second Sight is phasing out their retinal prosthetic device the Argus.

 

Gene Editing

GENE EDITING

Researchers have now developed “prime editing,” a true search-and-replace function for DNA.

CRISPR Cas9 which was hailed as a gene editing tool of the future, is not a foolproof gene editing mechanism. It’s a pair of DNA scissors that cuts the double helix, and what’s called “editing” is actually a cell’s attempt to patch things back together. That often introduces errors and therefore implantation of human embryos that have been edited by CRISPR is banned internationally. Researchers have been searching for ways to make CRISPR live up to its promise as a real search-and-replace function for gene mutations. Dr David Liu, from Harvard University, has now developed “prime editing” a molecular tool that can rewrite any type of genetic error without actually severing the DNA strand, as CRISPR does. The new technology uses an engineered protein that can transform any single DNA letter into any other, as well as add or delete longer stretches. In fact, Liu claims it’s capable of repairing nearly any of the 75,000 known mutations that cause inherited disease in humans.

 

Diet and the risk of AMD

Diet and the risk of Age Related Macular Degeneration 

The department of Ophthalmology at Erasmus University, Rotterdam recently published their findings on diet and the risks of developing Age Related Macular Degeneration. They concluded that a diet of 200 grams per day of vegetables, fruit twice per day, and fish twice per week is associated with a significantly reduced risk of AMD.

 

Retina International World Congress

RETINA INTERNATIONAL WORLD CONGRESS

The management committee meeting held in late November nominated James Cape, Chairman and Claudette Medefindt, Head of Science, to represent Retina South Africa at the World Congress in Iceland in June.

    

Membership fees and research funding

MEMBERSHIP FEES AND RESEARCH FUNDING

Fees for 2020 [ R240] are now due. We thank all those who have paid and also for your generous contributions to research. We are still dramatically short on our grant to the University of Cape Town for 2020, without whom no research or genetic testing could be done. We truly need your support for this project.

Our 2020 Circle of Light Competition is now open. For just R250 per year you may win R500 in the monthly draw. Banking details: Retina South Africa, Standard Bank, Bedfordview branch, Code 018305, Account number 020312164. Please send us a copy of the eft and your details.

MY SCHOOL/ MY PLANET: please nominate Retina South Africa as your beneficiary and, at no costs to you, every time you swipe your card Retina South Africa receives a donation. See their website or enroll at any Woolworths store.

 The management and staff of Retina South Africa wish all our readers a healthy and happy 2020.

PLEASE LET YOUR GIVING THIS YEAR BE FOR VISION.

 

Financial Assistance for Disabled learners

FINANCIAL ASSISTANCE

 ADULT LEARNERS OFFERED LIFE-CHANGING SECOND CHANCE

The Second-chance Matric Programme Disability Task Team is in search of adults who are blind or deaf, wishing to obtain a matric qualification. People aged 21 and older with a grade 9, 10 or 11 pass and those who previously attempted the matric examinations but were unsuccessful, are encouraged to register on the programme. Interested people and organisations for the blind or deaf can contact Nad Ramsarup at nramsarup@gmail.com or on 0119769216.

MATRICULANTS

Financial assistance is also available for matriculants with vision loss who wish to study further. Please go to; www.nsfas.org.za/content/disability-support.html

 

More Information

MORE INFORMATION

For more information on various forms of retinal degeneration see the Research tab on the main page of this website or the excellent toolkits on the Retina International Website www.retina-international.org

The FFB website is also an excellent source of reliable information. www.blindness.org

 

Audio Inerview

AUDIO INTERVIEW

Claudette Medefindt, head of Science was interviewed on 702 during World Retina Week. To listen: http://www.702.co.za/podcasts/110/the-best-of-early-breakfast/249166/what-is-retinal-disease

 

 

Assistive devices and Apps

For more information on assistive devices and smart phone apps see the assistance tab on the main page of this website. To discuss these and any other aspect of assistance call us.  We are available, by appointment, for free telephonic counselling or individual counselling. Help line share call  0860595959.

Discalianer

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.

Thank you Bausch and Lomb r

BAUSCH AND LOMB

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.

Bausch & Lomb Incorporated. ®/™ denote trademarks of Bausch & Lomb Incorporated.

Applicant: Soflens (Pty) Ltd. Reg. No.: 1968/011787/07. 254 Hall Street, Centurion. Tel: +27 10 900 1356. www.bausch.co.za

DISCLAIMER

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.

THANK YOU BAUSCH AND LOMB FOR YOUR CONTINUED SUPPORT OF OUR WORK.

 

 

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