e-Newsletter June 2023

We’ve had a huge amount of interest from our community wishing to join us in person for our Annual Conference. We’re so looking forward to seeing you all.

If you did register to join us, you should have received Joining Instructions by email last last week, including the programme (don’t forget to check your spam folder). If you didn’t receive the email, please call our Communications Manager, Jane, on 07719 967368 or call our office on 01280 821334 so that we can check your registration.

If your plans have now changed, and you are no longer able to attend, please complete this form to update your registration: RetinaUK.org.uk/events/update-conference-registration/.

If you haven’t already registered, there’s still time to register to join us online. Please complete the registration form on our website: RetinaUK.org.uk/annual-conference.

Find out more and register

Researchers at University College London are looking for Apple smartphone users with sight loss to take part in a study developing a new app to help better understand what it is like living with visual impairment.

As part of the study, you will be asked to download a smartphone app which collects information about your lifestyle, for example, the number of steps you take per day. You will also be asked to complete some surveys through the app. It is hoped that the findings will provide new insights into the impact of visual impairment and support new developments in the sight loss sector.

The app is currently available on Apple smartphones only, although the team hope to include other types later on. If you have an Apple device, and are interested in hearing more about the study, please email Dr Lee Jones: lee.jones10@nhs.net

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

Berkshire – Saturday 17 June, 1.00pm-3.00pm – In-person
Social catch up over lunch and drinks at the Three Guineas Pub in Reading.

East Midlands – Tuesday 20 June, 7.00pm-8.00pm – Online
Guest speakers Emma Lucas, Services Manager from My Sight Notts & Claire Winfield, CEO of Sight Support Derbyshire.

West Yorkshire – Wednesday 21 June, 7.00pm-8.00pm – Online
Guest speaker Fran Reilly, Eye Care Liaison Officer (ECLO) for the Calderdale and Huddersfield areas.

National Summer Meeting – Thursday 29 June, 7.00pm-8.00pm – Online
Would you like to get behind the wheel of a super-car or be in the pilot seat to fly a plane but never thought you could? If so, please join us and our guest speaker Paul Ashurst, Founder of Ablenet Ltd, a company offering tailored experiences to people with disabilities or visual impairments of all types.

Kent – Friday 30 June, 11.00am-2.00pm – In-person
Social catch up over lunch and drinks at the Society Rooms Pub in Maidstone.

Hampshire – Saturday 1 July, 11.00am – In-person
Summer social get together and walk through the Royal Victoria Country Park in Netley followed by lunch at one of their cafes.

Wrexham & Wales – Wednesday 5 July, 7.00pm-8.00pm – Online
Guest speaker Eleanor Rothwell, Community Connection Coordinator for the RNIB Wales.

‘Talking’ Tech – Thursday 6 July, 7.00pm-8.00pm – Online
To celebrate the first anniversary of our Discover Wellbeing service, we will be focusing this meeting around technology that can help or has helped you manage and or improve your physical, spiritual and cognitive wellbeing.

London – Sunday 23 July, 12.00pm-3.00pm – In-person
Summer social get together for a picnic in the park in Russell Square Gardens.

Find out more and find your local peer support group

Technical volunteer helper for Zoom meetings

Can you be our technical volunteer helper for our Zoom meetings?  We hold online peer support group meetings and need someone to help with the technical side of things such as monitoring the chat.  If you can navigate Zoom, have a few hours to spare each month and would like to be part of a fantastic team please get in touch with our volunteer coordinator for more information on 01280 821334 or email volunteering@RetinaUK.org.uk

Volunteer facilitators for Peer Support Groups

We also need volunteer facilitators for peer support groups in Essex, Hampshire, Lancashire, Merseyside and Milton Keynes to help us organise and run the meetings. Our groups provide a welcoming and friendly opportunity for people to meet up to share information and chat about inherited retinal conditions and many other topics.

The Retina UK Professionals’ Conference on Friday 23 June is aimed at anyone who works with our community in a professional capacity.

Speakers include Dr Jasleen Jolly (Anglia Ruskin University), Rob Cooper (RNIB), Dr Amanda Salisbury and Prof Susan Downes.

You can choose to join us in-person in London at the University of Westminster (Marylebone campus) or online from the comfort of your own home/office.

We are pleased to be offering CPD points for delegates attending the Professionals’ Conference, whether it be in person, or online.

Find out more and register

Have you ever really thought about how you use your  sensations after sight loss? Does your sense of humor relate to your ability to tell a joke or hear a joke? Find the answers to these questions and more in our ‘Blindingly Chatty’ podcast from Laura and Mark.

Listen to the podcast

Now the longer & brighter evenings are here, why not take part in a new fundraising challenge which will keep you fit, and also raise funds for Retina UK?  We have lots of fantastic walks, amazing treks, and super runs to get involved with!

Visit RetinaUK.org.uk/get-involved/fundraising/take-on-a-challenge/ or contact the friendly Fundraising Team at Fundraising@RetinaUK.org.uk or by calling 01280 815900.