e-Newsletter July 2025

We are pleased to announce that our Summer Raffle is now live! To be in with the chance of winning some incredible prizes, for just £1 an entry, please visit our raffle page to take part or request your physical books. Every ticket purchased helps us raise vital funds to support those living with inherited sight loss and fund life-changing medical research. Your contribution truly makes a real difference to the lives of those living with inherited sight loss. Good luck!

Moorfields Eye Hospital is participating in the ongoing AAVantgarde Bio Ushers 1B study.

1. The study is looking for patients with the following general criteria:
2. Male or Female between 18-60 years of age.
3. Confirmed diagnosis of Usher 1B due to MYO7A mutations confirmed by an approved lab.
4. No previous treatment with an investigational gene therapy

Patients who are interested in the study can contact Sarah Hill at Moorfields Eye Hospital London:  [email protected]

More information about the trial is on our website.

Join us for an insightful conversation about building a career while living with sight loss. Hosted by Lauren Osborne-Lewis, this session will feature four brilliant guests; Ryan, Lauren, Aysha and Danielle – who will share their personal journeys into the world of work. They’ll talk about the challenges they’ve faced, the strategies that helped them succeed, and the support that made a difference.

Whether you’re at school, thinking about college or university, or wondering about your first job, this webinar will give you the chance to hear from peers who understand the unique experiences of sight loss in the workplace.

Date: 17 July
Time: 7pm – 8pm
Platform: Online (Zoom)

Register now: Webinar: Career pathways for young people with sight loss – Retina UK

Join researcher Dr Ana Alonso-Carriazo Fernandez for a free coffee and hear about her research on how different genetic mutations cause inherited sight loss and how scientists might develop new treatments.

Date: Wednesday 23 July 2025
Time: 3 – 4 pm
Location: Coffee Junction, 42 Provost Street, London, N1 7SU (a 5-minute walk from Moorfields Eye Hospital)

For more information and to RSVP: https://moorfieldsbrc.nihr.ac.uk/event/coffee/ 

Registration is open for the Retina UK Professionals’ and Annual conference 2025, taking place on the 19 and 20 September at Holiday Inn, Regents Park, London.

Don’t miss this opportunity to connect, learn, and share with others in the inherited sight loss community.

To register phone 01280 821334 or use the links below:
Professionals’: Retina UK Professionals’ Conference 2025
Annual: Retina UK Annual Conference 2025

Funding is available towards travel and accommodation expenses of those aged 18 to 30 who attend in person. More information can be found here: Financial support for young people attending conference – Retina UK

Retina UK is considering developing a secure UK-wide registry – a trusted, secure database combining medical and personal experience data from people living with inherited retinal conditions.  As with everything we do, we would really value input from members of our community.

The overarching goals of the project are to increase and improve the quality of data available to researchers, and to make it easier to find people to take part in clinical trials and gain access to treatments.

We’re running small online focus groups to hear your thoughts, questions, and ideas. Each session will include up to 6 participants, will last 90 mins and   . A trained facilitator will guide the conversation, and your feedback will help shape how the registry is designed, communicated, and made accessible to everyone.

What to expect:

• A relaxed 90-minute conversation
• A chance to share your perspective and influence an important project
• No preparation needed – just come as you are

Focus group sessions:

• Monday 21 July, 7.00–8.30pm | Parents/carers of children with inherited retinal dystrophies (IRDs)
• Tuesday 22 July, 7.00–8.30pm | Young adults (aged 18–30)
• Wednesday 23 July, 4.00–5.30pm | Older adults (aged 55+)
• Wednesday 23 July, 7.00–8.30pm | Adults (aged 31–54)

If you’re interested in taking part, please register your interest via our website. Places are limited to ensure everyone has a chance to speak.

We’d love to hear from you!

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). To make a donation to our 50th anniversary appeal, or call 01280 815900. You can also text ANNIVERSARY to 70560 to donate £10 to Retina UK. Thank you in advance for your continued generosity.

*NEW LOCAL GROUP LAUNCH ANNOUNCEMENT*

Dorset & South West Local Peer Support Group
Tuesday 22 July – 7pm to 8pm – Online
We are constantly striving to grow our peer support group network so are pleased to invite you to join us for the launch meeting of our new Dorset & South West Local Peer Support Group and delighted to introduce our volunteer group facilitator and longtime supporter, Suzanne Clarke.

‘Talking’ Tech Peer Support Group
Tuesday 15 July – 7pm to 8pm – Online
Come and join us for our latest meeting where we are excited to be joined by our guest speaker Sam Seavey, assistive tech expert and the visionary behind The Blind Life YouTube channel.

Belfast Local Peer Support Group
Wednesday 16 July – 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 Maria Bradley.

Manchester Local Peer Support Group
Thursday 17 July – 7pm to 8pm – Online
Come and join Rachael and the group for their latest online meeting to hear from guest speaker Dawn Bridgehouse, a ROVI from the Manchester area.

West Midlands Local Peer Support Group
Saturday 19 July – 2pm to 4pm – In-person
Please come and join Perm and the group for their latest social catch up over lunch at The Railway pub in Birmingham City Centre.

‘Talking’ Travel Peer Support Group
Thursday 24 July – 7pm to 8pm – Online
Come and join Richard & Rachael for our latest meeting to hear from our guest speaker and experienced V.I world traveller, Emily Bartell.

National Peer Support Group
Tuesday 29 July – 7pm to 8pm – Online
Please come and join us for our Summer National meeting where we are delighted to welcome our guest speaker Emma Scott, Director of Commissioning and Editorial at Calibre Audio.

Men’s Peer Support Group
Wednesday 30 July – 7pm to 8pm – Online
Come and join us for our latest Men’s Peer Support Group online social catch up.

Berkshire Local Peer Support Group
Saturday 2 August – 12.30pm to 4.30pm – In-person
Come and join James and the group for a Summer social get together over lunch at Carluccio’s restaurant in Reading City Centre.

Edinburgh Local Peer Support Group
Saturday 13 September – 11am to 1pm – In-person
Come and join Valerie and the group when we return to the Festival Theatre in Edinburgh to hear from guest speakers Graham Gunning & Fraser Fleming from TripleTapTech.

For out more about our peer support groups.