e-Newsletter May 2024

You asked us to move our Annual Conference north and we’ve done just that! Join us in central Manchester on Saturday, 28 September for what promises to be an uplifting and informative day, and the great news is it’s free to attend.

While we’d love you and your friends and family to join us in person, you can also register to watch the sessions live online.

We are still adding finishing touches to the programme, but it already includes the opportunity to:

• Hear Professor Graeme Black, consultant ophthalmologist and experienced researcher,  in conversation with Retina UK’s three new PhD students.
• Join us as we take a deep dive into our newest research projects with the scientists leading this exciting work.
• Listen to our community explain how Retina UK’s peer support services have improved their health and wellbeing.
• Take part in our ever-popular research Q&A. Panel participants will include Professor Graeme Black and Dr Panos Sergouniotis.

So come along and spend the day with others living with inherited sight loss, chat to Retina UK’s friendly staff and volunteers and meet exhibitors from across the sight loss sector.

Our conference is always popular and in-person places are limited so register today at: RetinaUK.org.uk/annual-conference

The venue is the Pendulum Hotel (M1 3BB) located just a short walk from Manchester’s railway stations.

Through Their Eyes is a game-changer, offering a safe space to share experiences, frustrations, triumphs without judgement, easing parents’ struggles. This innovative approach addresses the significant emotional challenges faced by parents, by fostering a sense of community, understanding, and shared strength. Our project will lead to better outcomes for both parents and their children.

Thanks to Champion funding, every  donation will be doubled at no extra cost to you*. Help us to reach our target of £30,000.

Find out more by visiting our website: RetinaUK.org.uk/BigGive

Thank you so much for each and every donation!

*Whilst the match funding pot lasts.

We hold a CPD-accredited Conference specifically for professionals. It’s free to attend and being held in central Manchester on Friday, 27 September, and also online.

View the packed programme and book your place at: RetinaUK.org.uk/prof-conf. In-person numbers are limited for this popular annual event so early registration is advised.

Are you willing to share your experiences of accessing Retina UK information and support services? You could read our newsletters, attend a local peer support group, call or email our Helpline, listen to our Podcast, attend one of our events (e.g. Conference or Webinars) or simply have visited our website.

If you would be willing to share your story, please get in touch with Jane communications@RetinaUK.org.uk or call our office on 01280 821334 and we’ll organise an time to call you back. Your case study could appear in a newsletter, on our website or elsewhere to demonstrate our impact.

Eye2Gene Patient Surveys

Dr Nikolas Pontikos and the Eye2Gene team, from the UCL Institute of Ophthalmology and Moorfields Eye Hospital, are running an online survey to better understand how their research can help people affected by inherited retinal diseases.

The team is developing artificial intelligence to provide rapid, highly accurate diagnoses from retinal scans, and the survey asks about your own experiences of diagnosis and your opinions on the use of AI. It takes around 15 minutes to complete and can be found at https://qualtrics.ucl.ac.uk/jfe/form/SV_d0j45TJNqUGtxJA

If you encounter any problems, or would like to speak to a researcher to complete the survey over the phone, please email tiyi.morris@ucl.ac.uk

Sight Loss Study

Researchers led by Dr Jasleen Jolly at Anglia Ruskin University are looking for people living with sight loss to take part in a study about how the brain adapts to changes in vision. Participants will complete some computer-based tasks at the centre in Cambridge; travel expenses can be paid. For more information, please email Natalie Assaf, Research Assistant, at natalie.assaf@aru.ac.uk.

Berkshire
Tuesday 14 May – 7pm to 8pm – Online
Guest speaker Christine Cutts, Sight Loss Support Officer at Berkshire Vision.

London & South East
Saturday 18 May – 11am to 1pm – Online
Guest speaker Rory Field, CEO of Metro Blind Sport.

Belfast
Thursday 23 May – 10am – In-person
Come and join the Belfast Bumpers Group to ‘Dine out in Dublin’.

Merseyside Meet & Greet
Thursday 6 June – 7pm to 8pm – Online
Come and join us for an online meet & greet to relaunch the Merseyside peer support group.

Buckinghamshire Coffee Morning
Tuesday 18 June – 11.30am – In-person
Come and join us for an in-person coffee morning in Aylesbury to relaunch the Buckinghamshire peer support group.

A huge congratulations to our 22 #TeamRetinaUK runners who completed the TCS London Marathon 2024 last month, raising over £65,000 and making it our most successful event in eight years! Interested in running for us in 2025, visit our website.