e-Newsletter May 2025

A huge congratulations goes to our inspirational #TeamRetinaUK runners who braved the heat and the 26.2 miles last month for Retina UK and raised over £65,000 in the process! You can apply for a place in our 50^th anniversary team in April 2026 now.

We know a lot of people are concerned about the proposed changes to the Personal Independence Payment (PIP) that were announced at the end of March. Much of the proposal forms part of a wider consultation with the Department for Work and Pensions.

Join our Special Project Lead Matthew Carr in this upcoming webinar about Influencing with Retina UK to learn more about the proposals, Retina UK’s position and how you can make sure your voice is heard by your MP and in the consultation. Matt will also talk about different ways that you engage with politicians on both a local and a national level.

Date: 22 May
Time: 7pm – 8pm
Platform: Online (Zoom)

You can register by following this link: Webinar: Influencing with Retina UK – Retina UK

Our 50^th anniversary year starts in 2 weeks and we would love you to join #TeamRetinaUK and take on a challenge for us over the next 12 months. We have still got exclusive places remaining in the Great North Run 2025, the TCS London Marathon 2026, the London Landmarks Half Marathon 2026, the Adidas Manchester Marathon 2026 and many more events. Or, you could take on a skydive or round up your loved ones for a hike instead?

The Retina Clinic London is recruiting for three clinical studies, one for X-linked retinitis pigmentosa caused by the RPGR gene (which Retina UK has shared previously), one for Stargardt disease, and one for Usher syndrome type 1B caused by the MYO7A gene (also shared previously).

• X-linked RP: this study is a clinical trial of an RPGR gene therapy. Participants must be male, aged between 18 and 50, and have had a genetic test confirming that their sight loss is caused by the RPGR gene. There are various other criteria; if you are interested, the clinic staff will have a chat with you and invite you to a screening appointment if appropriate. All travel and accommodation costs will be covered no matter where you live in the UK, and you will not be charged for the trial treatment. Recruitment for this study is likely to close in June, so contact the clinic straight away if you’re interested (see details below).
• Stargardt disease: this is an observational study and does not involve a potential treatment at the moment. However, there are plans to introduce treatment testing by the end of 2025. Those already involved in the observational study will be best placed to move into the treatment study when this goes ahead. Participants must be aged between 18 and 55 and have had a genetic test confirming that their sight loss is caused by biallelic mutations in the ABCA4 gene. (Biallelic means that both copies of the gene contain a mutation.) All study-related activities are free of charge; travel expenses will be covered up to £600 per visit and can cover expenses for a companion as well the participant themselves.
• Usher syndrome type 1B: this study is a clinical trial of a gene therapy. Participants must be aged between 18 and 50 and will need to have a genetic diagnosis confirming that their Usher syndrome is caused by the MYO7A gene, which causes USH1B. There will also be a number of other criteria to meet; clinic staff will be happy to explain these to you if you make an initial enquiry. Participants’ travel expenses will be fully covered and all study-related activities are free of charge.

If you are interested in taking part in any of these studies, please contact the clinic directly via info@theretinacliniclondon.com or on 020 4548 5310.

For just £1 a line, you could be in with the chance of winning £25,000 every week through our Retina UK Lottery! We’ve created 22 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.

Berkshire Local Peer Support Group 
Monday 19 May – 7pm to 8pm – Online
Come and join James and the group for their latest online social catch up.

West Midlands Local Peer Support Group
Saturday 24 May – 11am to 1pm – In-person
Please come and join Perm and the group for a fascinating day out at the West Midlands Police Museum.

South Yorkshire Local Peer Support Group
Saturday 24 May – 12pm to 2pm – In-person
Come and join us for our second in-person get together at Endcliffe Park in Sheffield for a leisurely walk followed by coffee and a bite to eat at their cafe.

Young Adults Peer Support Group
Tuesday 27 May – 7pm to 8.30pm – Online
Are you aged 18 to 30 and living with an inherited retinal dystrophy? Then come and join us for our latest Young Adults online social catch up and meet our new group facilitator Martik Aghajanian.

‘Talking’ Creative Arts Peer Support Group *Launch Meeting*
Thursday 29 May – 7pm to 8pm – Online
To celebrate National Creativity Day in May we are delighted to be launching this brand new interest focused peer support group to bring together those living with inherited sight loss and who share a passion for all things creative.

Manchester Local Peer Support Group
Saturday 31 May – 12pm to 5pm – In-person
Come and join Rachael and the group at The Waldorf Pub in Manchester with guest speakers Anthony Gough and Richard Zimbler, Trustees at North Wales Accessible Holidays for Blind and Visually Impaired.

Buckinghamshire Local Peer Support Group
Thursday 12 June – 12pm to 2pm – In-person
Come and join us for our latest in-person get together at Vale Park in Aylesbury for a leisurely walk followed by coffee and a bite to eat at the Aqua Vale Swimming & Fitness Centre Cafe.

Belfast Local Peer Support Group
Thursday 12 June – 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 Ann-Marie Houston.

Tyne & Wear / Northern Alliance Peer Support Group
Saturday 28 June – 1pm to 7pm – In-person
Come and join Colin Hetherington and the group for their latest social event at the Tyneside Irish Centre in Newcastle.

Save the Date

• Save the Date – Isle of Wight Local Peer Support Group
  Tuesday 3 June – 11am to 1pm – In-person
• Save the Date – Men’s Peer Support Group
  Wednesday 18 June – 7pm to 8.30pm – Online

Please note that some of the ‘save the dates’ may be subject to change – 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/

Have your say and become a Retina UK member in 2025! By becoming a member, you will be able to vote in our AGM, share your views about living with inherited sight loss and support our vital work at the same time. Find out more and join us today.