e-Newsletter October 2025

We are pleased to announce that Retina UK will be the focus of a BBC Lifeline Appeal on BBC One on Sunday 16 November 2025. Sign up for a reminder and please spread the word with your loved ones. For 50 years, Retina UK has been at the forefront of funding the best science, searching for genes and treatments for everyone living with inherited retinal dystrophies (IRDs) and we are excited by this opportunity to raise awareness on the BBC.

The clinical trial research team at Oxford Eye Hospital have asked us to share an opportunity to participate in a Phase 2 clinical trial for Ultevursen. This trial is open to those aged 8+ years old, with a specific mutation in the gene USH2A.

Ultevursen will only work for those individuals whose condition is caused by mutations in exon 13 of the USH2A gene. This can be confirmed by a genetic test. If you are unsure about your specific mutation in the USH2A gene, this can be discussed with the clinical trial team at Oxford directly, who will be able to advise.

The trial, known as LUNA, is aimed at testing the safety and tolerability of Ultevursen, administered by an intravitreal injection. Ultevursen is a type of RNA-based therapy called an antisense oligonucleotide, which in effect, can work by putting a patch over the faulty genetic sequence and allowing the retinal cell to produce a functional protein.

Potential participants will need to meet a variety of further requirements for enrolment within the trial and may need to undergo further screening tests. This trial may not be suitable for those with very advanced sight loss.

LUNA will involve 81 participants, with 2 thirds receiving Ultevursen and 1 third receiving a sham treatment as part of the control group. Both groups will receive an intravitreal injection (an injection into the jelly-like substance of your eye), on day 1 of the trial, and at 6, 12 and 18 months. The trial will last 2 years.

Contact details for the researchers can be found below, so do get in touch with them directly if you have any questions or would like to take part.

This is a link to the clinical trial unit website: https://www.eyeresearchoxford.org.uk/contact

The email is:  [email protected]

The telephone number is: 01865 231122

Join us for an inspiring evening as we look back on the incredible Retina UK Sahara Trek 2025.

In “Steps Through the Sand: stories from the Retina UK Sahara Trek”, you’ll hear firsthand from some of our amazing trekkers who took on this once-in-a-lifetime challenge – trekking across the vast Sahara Desert to raise vital funds and awareness for people affected by inherited sight loss.

Our speakers will share their personal stories, memorable moments, and the highs and lows of life in the desert, from the blazing dunes to the powerful sense of teamwork and purpose that carried them through.

Whether you’re curious about taking on your own adventure, want to relive the journey, or simply love hearing uplifting stories of courage and community, this is an event not to miss.

Date: 19 November
Time: 7pm

Location: Online

Register now: Webinar: Steps through the sand: stories from the Retina UK Sahara Trek – Retina UK

Next summer, Retina UK will be hosting a spectacular gala dinner as the grand finale to our 50^th anniversary year – and you’re invited. Join us on Saturday, 6 June 2026 at the Hilton on Park Lane in London for a truly unforgettable evening and the culmination of our special year. Find out more and buy your tickets.

Researchers at Cardiff University are conducting an online study to explore visual imagination in individuals with sight impairment. This research aims to better understand why some people experience visual hallucinations, known as Charles Bonnet Syndrome, following sight loss.

They are seeking participants who are certified as Sight Impaired or Severely Sight Impaired in the UK and are aged 18 or over. You can take part whether or not you have experienced visual hallucinations yourself.

The study is entirely online and will take approximately 60 minutes to complete. It involves filling out a questionnaire about:

1. The nature of your sight impairment
2. Your experience of visual hallucinations following sight loss (if applicable)
3. Your ability to imagine different visual scenes vividly

Participation is completely anonymous.

For more information and to take part, please visit https://tinyurl.com/sight-impairment-study.

We’re getting in the festive spirit at Retina UK and our Christmas cards are selling fast. Have you stocked up on yours yet? Visit our shop to purchase yours and spread some festive joy this winter.

Manchester Local Peer Support Group
Saturday 25 October – 12pm to 5pm – In-person
Come and join Rachael and the group for their latest in-person meeting at The Waldorf pub, with guest speaker Nina Rios, Community Enablement Officer from the Sight Loss Support Team at Henshaws.

‘Talking’ Travel Peer Support Group
Tuesday 28 October – 7pm to 8pm – Online
Come and join Richard & Rachael for our latest meeting to hear from our guest speaker Liam Geschwindt, Cofounder & CEO of Touch Pulse who will talk about their new outside navigational app Navis.

Belfast Local Peer Support Group
Thursday 30 October – 7pm to 8pm – Online
Come and join Kim, Annmarie and the Belfast Bumpers Group for a social catch up and to hear from our guest speaker and group member Joe Bourke.

Men’s Peer Support Group
Tuesday 4 November – 7pm to 8.30pm – Online
Come and join us for our latest Men’s Peer Support Group online social catch up.

Women’s Peer Support Group
Wednesday 5 November – 7pm to 8pm – Online
Please come and join facilitators Danielle & Perm for our latest Women’s Peer Support Group where we will be joined by guest speaker Seema Flower, Founder and Managing Director of Blind Ambition.

*Save the Date* Home & Garden Peer Support Group
Thursday 6 November – 7pm to 8pm – Online
Please come and join us for our latest meeting where we are delighted to introduce and welcome our new Home & Garden volunteer group facilitator, Brian Coates, who has a wealth of knowledge and experience around this subject.

*Save the Date* Young Adults Peer Support Group
Tuesday 11 November – 7pm to 8.30pm – Online
Please come and join Martik and the group for their latest online social catch up.

*Save the Date* Tyne & Wear/Northern Alliance Peer Support Group
Saturday 15 November – 1pm to 4pm – In-person
Come and join Colin and the group at the Tyneside Irish Centre for a Christmas get together with a raffle and festive buffet lunch courtesy of the Blind Baker.

Berkshire Local Peer Support Group
Monday 17 November – 7pm to 8pm – Online
Come and join James and the group for their latest online social get together.

*Save the Date* ‘Talking’ Tech Peer Support Group
Thursday 20 November – 7pm to 8pm – Online
Come and join us for our latest meeting where we will be giving a tech round up following our attendance at Sight Village in London.

*Save the Date* West Midlands Local Peer Support Group
Saturday 6 December – 2pm to 4pm – In-person
Please come and join Perm and the group for their Christmas social catch up over a Bottomless Brunch at The Railway pub in Birmingham City Centre.

*Save the Date* Berkshire Local Peer Support Group
Saturday 6 December – 12.30pm to 4.30pm – In-person
Come and join James and the group for their Christmas social get together over lunch at Carluccio’s restaurant in Reading City Centre.

*Save the Date* Dorset & South West Local Peer Support Group
Tuesday 9 December – 7pm to 8pm – Online
Please come and join Suzanne and the group for a festive online social catch up.

For more information and to be kept up to date with peer support group activity please visit the Events page on our website – https://retinauk.org.uk/information-and-support/services/local-peer-support-groups/

For just £1 a line, you could be in with the chance of winning £25,000 every Friday through our Retina UK Lottery! We’ve created 35 winners over the last year and you could be next. What would you spend your winnings on? Sign up today and support our vital work.