e-Newsletter February 2024

This month is retinitis pigmentosa (RP) Awareness Month. Your ongoing support enables us to invest in medical research, whilst also providing a range of information and support to help our community to lead their best lives.

We understand that times are tough but if you are able to support us this February we would be very grateful. You can:

• Donate online
• Call us on 01280 815900.
• Text RPFIVE to 70560 to donate £5.
• Text RPTEN to 70560 to donate £10.
• Text RPTWENTY to 70560 to donate £20.

Please note, text donations will be added to your monthly bill and will cost your donation plus one standard network rate message.

Thank you.

You told us you’d like us to move our Annual Conference north and we’ve done just that. We are excited to announce that this year’s Annual Conference and AGM will be held both in person, and online on Saturday 28 September in Manchester. The in-person venue is the Pendulum Hotel, Manchester (M1 3BB). Our Professionals’ Conference will be held on Friday 27 September at the same venue.

We are planning a fantastic line-up of speakers and topics for both events. In the meantime, please save the date and complete the short registration form on our website if you would like us to contact you when full delegate registration opens:

RetinaUK.org.uk/annual-conference

RetinaUK.org.uk/prof-conf

We’re super proud of our volunteers at Retina UK, they are a fantastic, passionate and friendly group. Without them we couldn’t deliver our vital information and support services for those affected by inherited sight loss.

We believe they deserve the very best support and training wherever they are based – could you be the person to provide this?

Find out more about this job vacancy.

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

‘Talking’ Travel – online Thurs 15 Feb, 7.00pm – 8.00pm
Introducing our new interest focused peer support group giving you the opportunity to share your travelling experience, tips, hints and advice. From general mobility, including white cane and guide dog training, to public transport and V.I Activity Holidays to travelling abroad.

Men’s Peer Support Group – online Tues 20 Feb, 7.00pm – 8.00pm
Come along to our new men’s peer support group to catch up with old friends and to make some new ones in our optional breakout rooms.

Tyne & Wear (in collaboration with Northern Alliance VIP’s) – online Wed 21 Feb, 7.00pm – 8.00pm
Guest speaker Russell Morrow, Counselling Therapist at the British Association for Counselling and Psychotherapy.

West Midlands – online Tues 27 Feb, 7.00pm – 8.00pm
Guest speaker Sandra Troth, Development Worker for Sandwell Visually Impaired.

Wrexham & Wales – online Wed 28 Feb, 7.00pm – 8.00pm
Guest speaker Lucy Ashton, Business Development at Seable Holidays.

West Yorkshire – online Thurs 29 Feb, 7.00pm – 8.00pm
Guest speaker Kathryn Fielding, Senior Development Officer at Goalball UK.

Scotland – online Tues 5 Mar, 7.00pm – 8.00pm
Guest speaker Gabriella Szalay, a 5th year Master of Architecture Student at Robert Gordon University in Scotland.

Belfast – in-person Sat 9 Mar, 12.00pm – 3.00pm
Social get together at the Europa Hotel to discuss group plans for 2024.

Isle of Wight – in-person Mon 11 Mar, 11.00am – 1.00pm
Monthly social meet up at the Alamo Restaurant in Ryde.

London & South East – in-person Sat 16 Mar, 10.45am – 4.00pm
Join us for a Day of Discovery at the Horniman Museum!

Save the date:

• Berkshire – online Tues 12 Mar, 7.00pm – 8.00pm
• East Midlands – online Wed 13 Mar, 7.00pm – 8.00pm
• ‘Talking’ Tech – online Thurs 14 Mar, 7.00pm – 8.00pm
• Tyne & Wear (in collaboration with Northern Alliance VIP’s) – In-person
• Sat 23 Mar, 1.00pm – 7.00pm
• National Peer Support Group – online Thurs 28 Mar, 7.00pm – 8.00pm
• Edinburgh – in-person Tues 2 Apr, 1.00pm – 3.00pm

With more treatments coming through the development pipeline, we are all hopeful that more of those living with inherited sight loss will be offered the opportunity to take part in clinical trials in the years to come.

But what’s it like to be a participant? What do you need to consider before you commit? And how does it feel as a parent to allow your child to take part?

Kate Arkell, Research Development Manager at Retina UK, spoke to Bhavna and Ethan in January as part of our Webinar series. Watch the video recording or listen to the audio only recording on our website.

Saturday 16 March: 9.00am – 5.00pm

Esme’s Umbrella is pleased to announce an information day for all patients, carers and families affected by Charles Bonnet Syndrome (CBS). Refreshments and lunch are available throughout the day.

It promises to be a relaxed and friendly day with excellent speakers and opportunities to ask questions. Everyone is welcome and carers and family members are encouraged to attend too.

Current agreed speakers:

• Judith Potts (Founder of Esme’s Umbrella)
• Dr Jasleen Jolly (Associate Professor at The Vision and Eye Research Institute, ARU, Cambridge, Fellow of the College of Optometrists)
• Gayle Barrow (Instructor/Researcher at Medical Detection Dogs)
• Nina Chesworth (Projects and Campaigns Coordinator Visionary. Lived Experience of CBS)
• Miles Northwood (Former England Blind Cricketer, now Community Fundraiser for Guide Dogs)
• Dr Lee Jones (CBS Researcher)

Register for your free place at the Esme’s Umbrella Information Day