e-Newsletter – May 2023

Our monthly e-Newsletter featuring the latest updates from Retina UK.

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Register now for our Annual Conference & AGM on Saturday 24 June. You can choose to join us in-person in London at the University of Westminster (Marylebone campus) or online from the comfort of your own home.

Highlights include:

  • Stronger together: working in partnership to achieve our aims
    Panel session with Rob Cooper, RNIB and James Clarke, Retina UK supporter
  • Tomorrow’s World: The Technology of the future
    Mr Glenn Tookey, Sight and Sound Technology and Robert Quinn, University College London (UCL)
  • The latest research
    • Retina UK’s strategic vision of treatment for all – Kate Arkell, Retina UK
    • Gene therapy – Augmentation, Editing, and Silencing – Prof. Tara Moore
    • The potential of stem cell treatments – Prof. Lyle Armstrong
    • Practical Example of Gene Therapy – Mr Kanmin Xue
    • Practical Example of the Role of Synthetic Implants, i.e. Bionic Eyes
  • Research/Medical Q&A
    Mr Simon Keightley, Elizabeth Graham, Prof. John Marshall, Mr Kanmin Xue, Prof. Lyle Armstrong and Prof. Tara Moore

Find out more and register

A research team from Melbourne, Australia, has developed a new questionnaire on gene therapy for inherited retinal disease, known as the Attitudes to Gene Therapy for the Eye (AGT-Eye) survey. They have completed an Australian study, in which almost 700 people with inherited retinal conditions provided their views on gene therapies. Read about the results of the study here. 

They now wish to expand this globally, to collect the views of those living in other countries.

If you have an inherited retinal condition, you are invited to complete a survey on your knowledge and expectations regarding future gene therapy trials for inherited retinal diseases. At the end of the survey you can indicate if you would like to receive a summary of the results at the end of the study (anticipated 2024), and if you would like to participate in future online research of this nature.

If you would like to be involved, please visit

https://www.cera.org.au/survey-global-survey-of-potential-participant-perspectives-on-ocular-gene-therapy/ .

If you have any problems taking part, please email the researchers directly via: myra.mcguinness@unimelb.edu.au or ac.brittenjones@unimelb.edu.au

Retina UK is not involved with this study.

Chat with other people living with inherited sight loss at one of our free upcoming Local Peer Support Group meetings.

West Midlands

Next meeting: Tuesday 23 May – 7.00pm – 8.00pm (online)

We invite you to join group facilitator Perm Bhachu for our

next meeting where we will be welcoming guest speaker Aimee Monk, Visitor Journey Consultant from the National Trust who will be speaking about some of the activities and experiences that are available in the Trust and how accessibility friendly they are for the visually impaired.


Next meeting: Thursday 25 May – 10.00am (in-person)

Group facilitator Kim Lamb invites you to join the Belfast group for a walk along the beautiful and picturesque paved coastal path next to Bangor seafront followed by lunch at the Kook Bangor restaurant. Meeting up and traveling from Great Victoria train station to Carnalea where we will take the 2.4 mile walk into central Bangor for a tasty lunch.


Next meeting: Thursday 25 May – 10.30am (in-person)

We are pleased to invite you to join group facilitator Chris Turner at the Ashmolean Museum in Oxford for a fascinating tour and talk about Chinese history and their artefacts collection. Please meet up in the foyer at 10:30am where you will greeted by Chris and museum staff.

Technical volunteer helper for Zoom meetings

Can you be our technical volunteer helper for our Zoom meetings?  We hold online peer support group meetings and need someone to help with the technical side of things such as monitoring the chat.  If you can navigate Zoom, have a few hours to spare each month and would like to be part of a fantastic team please get in touch with our volunteer coordinator for more information on 01280 821334 or email volunteering@RetinaUK.org.uk 

Volunteer facilitators for Peer Support Groups

We also need volunteer facilitators for peer support groups in Essex, Hampshire, Lancashire, Merseyside and Milton Keynes to help us organise and run the meetings. Our groups provide a welcoming and friendly opportunity for people to meet up to share information and chat about inherited retinal conditions and many other topics.

Volunteers are at the heart of our charity; we simply couldn’t do what we do without them. Our amazing volunteers are diverse in age, background and ethnicity. Some are living with or directly affected by an inherited sight loss condition, some choose to volunteer for other reasons, including meeting people and making new friends. We have recently published a Volunteer Impact Report, highlighting their contribution. It is available on our website, in PDF format and as an audio recording.

Read the Volunteering Impact Report

The Retina UK Professionals’ Conference on Friday 23 June is aimed at anyone who works with our community in a professional capacity.

Speakers include Dr Jasleen Jolly (Anglia Ruskin University), Rob Cooper (RNIB), Dr Amanda Salisbury and Prof Susan Downes.

You can choose to join us in-person in London at the University of Westminster (Marylebone campus) or online from the comfort of your own home/office.

We are pleased to be offering CPD points for delegates attending the Professionals’ Conference, whether it be in person, or online.

Register now

Now the longer & brighter evenings are here, why not take part in a new fundraising challenge which will keep you fit, and also raise funds for Retina UK?  We have lots of fantastic walks, amazing treks, and super runs to get involved with!

Visit RetinaUK.org.uk/get-involved/fundraising/take-on-a-challenge/ or contact the friendly Fundraising Team at Fundraising@RetinaUK.org.uk or by calling 01280 815900.

“We would like to wish everyone in the Retina UK Isle of Wight, Local Group, and their family & friends, taking part in the Hopefully to SeaView sponsored walk on the 11 of June, a wonderful day!”

This year is the 5th anniversary of the Hopefully to SeaView sponsored walk. Last year, the Group raised over £4,000, in support of Retina UK. We are hugely grateful to Group Leader, Colin McArthur and his wife, Linda, for organising the Hopefully to SeaView annual event.

If you are a member of a group who could be interested in a fundraising event, please get in touch with the Fundraising Team.

Audio Recording