e-Newsletter January 2025

We’re excited to announce that Mark Baxter, our Information and Support Coordinator, will be sharing his experience of visiting CES 2025 in Las Vegas in early January!

Date: 23 January
Time: 7pm – 8pm
Platform: Online (Zoom)

CES is the world’s leading tech event, showcasing the latest innovations that could transform the lives of people with vision impairments.

From advancements in assistive devices to breakthroughs in accessibility, Mark will provide insight into how the tech world is evolving to support people with vision loss and how these innovations may help improve the lives of those affected by inherited retinal diseases.

To register, visit our website: Webinar: Mark Goes to Las Vegas – Retina UK

February is Retinitis Pigmentosa Awareness Month and at Retina UK, we’d love you to come together to support our vital work throughout February and the whole of 2025 by spreading the word and getting involved.
Find out more about how you can support us during this awareness month. To make a donation to Retina UK, please either donate via our website, call us on 01280 821334, or you can donate via text, where texts will cost your donation plus 1 standard network rate message:

• To donate £5, text RPFIVE to 70560.
• To donate £10, text RPTEN to 70560.
• To donate £20, text RPTWENTY to 70560.

The Retina Clinic London is recruiting adults aged 18 to 50 who have a diagnosis of Usher syndrome type 1B for a clinical trial of a gene therapy developed by biotechnology company Aavantgarde.
Participants will need to have a genetic diagnosis confirming that their Usher syndrome is caused by the MYO7A gene, which causes USH1B. There will also be a number of other criteria to meet.
For more information and to discuss your possible eligibility, contact the clinic directly via: info@theretinacliniclondon.com or call  0204 548 5310 .
The Retina Clinic London’s lead investigator for this clinical trial is Prof Paulo E. Stanga, a member of Retina UK’s Medical Advisory Board.

USA-based Carroll Center for the Blind’s second annual Stargardt Summit will take place on Saturday 22 February, with online sessions running from 3pm to 6pm UK time.
Speakers and panel members include individuals living with Stargardt’s and parents of affected children, as well as leading researchers. For more information and to register for virtual (online) attendance, email development@carroll.org or visit: 2025 Stargardt Summit – The Carroll Center for the Blind

Is 2025 the year that you challenge yourself and join #TeamRetinaUK? We’ve introduced lots of new challenges for a brand new year, including bungee jumping, assault courses and more. Whatever the challenge – from walks, to runs, to skydives, to swims and so much more – we’ll be here to support you every step of the way. We’ve got places in the Virtual TCS London Marathon, Great North Run, The Big Half and many more top races, plus we’re returning to the Sahara Desert for our upcoming 50^th anniversary too. Join #TeamRetinaUK in 2025 and find out more on our website.

National Peer Support Group Winter Meeting – Thursday 16 January – 7pm to 8pm – Online – Please join us to hear from our guest speaker Andrew Palmer, Founder of V.I Safety who will be talking about staying safe and visible when out and about in the dark Winter months as well as sharing some useful illuminated and high vis products and clothing.

London & South East Local Peer Support Group Meeting  – Saturday 18 January – 11am to 1pm – Online – Come and join Bhavini and the group to hear from our guest speaker Lucy Ashton from Seable Holidays.

Men’s Peer Support Group Meeting – Tuesday 21 January – 7pm to 8.30pm – Online – We are delighted to welcome our guest speaker Jack Moffat, Engagement Manager North-East at Thomas Pocklington Trust, who will chat to us gents about how we can all manage our physical and mental wellbeing.

Manchester Local Peer Support Group Meeting – Saturday 25 January – 12pm to 2pm – In-person – Come and join Rachael and the group for their first social get together of 2025 at The Slug & Lettuce in Deansgate, Manchester.

‘Talking’ Tech Peer Support Group Meeting – Tuesday 28 January – 7pm to 8pm – Online – Come and join us for our first meeting of 2025 to hear from our guest speaker, Steven Poole, Service Delivery Manager at British Wireless for the Blind Fund and the amazing work they do for the V.I community.

South Yorkshire Local Peer Support Group Meeting – Saturday 1 February – 2pm to 4pm – In-person – We are pleased to announce that our West Yorkshire Group is moving to Sheffield and will now be known as our South Yorkshire Local Peer Support Group! Come along to the launch meeting and join Retina UK’s James Clarke and guest speaker Sarah Bennett from Sheffield Royal Society for the Blind for an in-person social get together at Grappa Sheffield.

Young Adults Online Winter Social – Thursday 6 February – 7pm to 8.30pm – Online – Are you aged 18 to 30 and living with an inherited retinal dystrophy? Would you like to meet peers of a similar age to share tips, hints and information? Then please come and join us to share your stories and experiences as a young adult who is living with progressive sight loss, catch up with old friends and make some new ones too.

*Coming Soon* ‘Talking’ Home & Garden Peer Support Group – Date TBC
Please register your interest if you would like to join us to share your tips, hints, stories and experiences around all things home & garden. Click here to find out more.

Did you know that we have our own Retina UK Lottery, where you could be in with the chance of winning £25,000 every single week for as little as £1 a line? What would you spend £25,000 on? You could start 2025 off with a bang and support Retina UK at the same time! Sign up to play our Lottery today.

Retina UK are pleased to share this upcoming event by Alice Gregory, who is holding an accessible dance class at Pineapple Dance Studio in London. This event is being shared by Retina UK, but it is not organzed by us.

Sunday 2nd March 2025
1-2pm
Pineapple Dance Studio, Covent Garden
£3 per person

Alice says; “Learn the Waltz and Rumba through description and practice to music with a partner.  Bring someone who supports you or dance with our volunteer dance class assistants. We can support people to walk between Covent Garden station and the venue. On registration, we will discuss your needs so we can try to best meet them in the class.”

There are limited places to ensure enjoyment: Register in advance by phoning/texting Alice: 07805 360709 or email alice_gregory@hotmail.co.uk