e-Newsletter – April 2023

Progress towards treatments for inherited retinal conditions continues to gather pace and there’s been lots going on in the last few months, with more and more approaches being explored. This round-up gives a flavour of the variety of developments, including plenty that are not specific to a particular genetic fault. Read the full article

Register now for our Annual Conference & AGM on Saturday 24 June. 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.

Highlights include:

• Stronger together: working in partnership to achieve our aims
  Panel session with Rob Cooper, RNIB and James Clarke, Retina UK supporter
• Tomorrow’s World: The Technology of the future
  Mr Glenn Tookey, Sight and Sound Technology and Robert Quinn, University College London (UCL)
• The latest research
  • Retina UK’s strategic vision of treatment for all – Kate Arkell, Retina UK
  • Gene therapy – Augmentation, Editing, and Silencing – Prof. Tara Moore
  • The potential of stem cell treatments – Prof. Lyle Armstrong
  • Practical Example of Gene Therapy – Mr Kanmin Xue
  • Practical Example of the Role of Synthetic Implants, i.e. Bionic Eyes
• Research/Medical Q&A
  Mr Simon Keightley, Elizabeth Graham, Prof. John Marshall, Mr Kanmin Xue, Prof. Lyle Armstrong and Prof. Tara Moore

Find out more and register now

A massive good luck and a huge thank you to our runners taking on the 2023 TCS London Marathon this weekend in London and around the UK in the Virtual Marathon. We hope this quote from James, #TeamRetinaUK 2022, will help spur you on:

“The iconic route, support from the crowd and incredible atmosphere makes the London Marathon one of the greatest sporting events in the world. I was delighted to reach the finish line and had a great sense of achievement that my training had paid off! I’m proud to have been able to raise so much!”

If you feel inspired to run in 2024, we’d love to hear from you. Call our Fundraising Team on 01280 815900 or email fundraising@RetinaUK.org.uk.

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

• Edinburgh (in-person)

Next meeting: Wednesday 19 April, 1.00pm – 3.00pm

We are pleased to invite you to our first meeting of 2023 where group facilitator, Valerie Scott, will be welcoming speaker Jo Hill, Patient Support Worker for Visibility Scotland based at the Princess Alexandra Eye Pavilion. Jo will speak about her role and the support services available to those living with sight loss across Edinburgh and the surrounding areas as well as answering any questions you may have.

• Manchester (online)

Next meeting: Thursday 20 April, 7:00pm – 8:00pm

We are pleased to invite you to come and join volunteer facilitator Rachael Foley and the group for our next Manchester Local Peer Support Group meeting where we are delighted to welcome our guest speaker, Paralympian Libby Clegg MBE.

We also offer two fully online Peer Support Group Meetings which anyone is welcome to join.

• ‘Talking’ Tech (online)

Next meeting: Thursday 11 May, 7.00pm – 8.00pm

Does Google give you grief or do you find it’s great? Is Alexa amazing or annoying? Are you best buddies with Bixby or does it bother you? And is Siri super or stressful to use? You are invited to our next ‘Talking’ Tech group meeting where we will be sharing support & advice and discussing the pros and cons of Smart Assistants.

• National Peer Support Group (online)

Next meeting: Thursday 29 June, 7.00pm – 8.00pm

Would you like to get behind the wheel of a supercar or be in the pilot seat to fly a plane but never thought you would be able to? If so we are pleased to invite you to our Summer National Peer Support Group meeting where we are delighted to be joined by Paul Ashurst, Founder of Ablenet Ltd, a company offering tailored experiences and products to people with disabilities or visual impairment of all types and ages.

Thursday 18 May, 7.00pm – 8.00pm

We are excited to be joined by Hair Stylist Anna Cofone to explore all things hair and scalp care.

Anna will talk about guidance on and learning how to determine the texture and type of hair and what type of products to use accordingly. How to wash your hair and what routine you should follow with your hair care products such as shampoo and conditioner. Discover the impact that hair care can have on a person’s self-esteem. Ending the session with time for Q&A.

Register now

We are starting new peer support groups in Essex, Merseyside and Milton Keynes and need local facilitators 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.

We also need a facilitator to join our established Hampshire group.

If you are friendly, have good communication skills and feel this role may be right for you please contact our Volunteer Coordinator for more information on 01280 821334 or email volunteering@RetinaUK.org.uk.

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.

Register now

Tickle everyone’s taste buds, and help raise funds for Retina UK with our Coronation Great Bake fundraiser during the Bank Holiday weekend.

Whether you bake a delicious Banoffee cake, using the recipe from community member, Gwyneth, or prefer shop- bought goodies, you could help raise funds for Retina UK at your Coronation celebration event.

Find out more and sign up at RetinaUK.org.uk/great-bake.