e-Newsletter April 2025

We want to ensure our current and future activities are relevant and that they respond to your needs. The only way we can be confident of this is to ask about your experiences, views and what matters to you.

We want to hear from even more people in 2025, so if you have completed the Survey in the past, it is vital that you take part again, so that we can track changes.

You can complete the survey online by visiting surveymonkey.com/r/SightLossSurvey2025, or call our office on 01280 821334 to book an appointment with a member of our team to complete the survey on your behalf over the telephone. The survey will take around 40 minutes to complete (longer if using assistive technology), so grab a cuppa.

As a thank you, everyone who completes the survey and provides their contact details will be automatically entered into a prize draw to win one of two £50 Amazon vouchers (or an equivalent voucher of your choice). Anyone who has already completed the survey and shared their contact details will also be automatically included in the draw. It’s just a small way of showing our appreciation for your time and input.

The deadline for completed surveys is Friday 25 April 2025.

In this inspiring session, our marathon runners will share their personal stories, motivations, and experiences as they take on this iconic challenge to raise awareness and vital funds for retinal conditions.

Hear firsthand how they are preparing for the marathon, the unique connection they have to Retina UK, and why they’re going the extra mile to help us support research and improve the lives of those affected by inherited retinal diseases.

Date: 15 April
Time: 7pm – 8pm
Platform: Online (Zoom)

You can register by following this link: Miles for Vision: Behind the Scenes of the London Marathon 2025 – Retina UK

May is National Walking Month and our 5K A Day in May challenge is back! Could you walk 5K every day in May to support the vital work of Retina UK? Our challenge is perfect for the brighter, longer days and you could even round up a group of you to take part! Find out more and sign up today.

Last week the UK Government announced major plans to change the benefit system which risk making many blind and partially sighted people worse off by hundreds, or even thousands, of pounds each year.

We should stress that, at the moment, these are just planned changes, and won’t be implemented until at least 2026.

Amongst the proposals include tougher criteria to be eligible for Personal Independence Payment (PIP) and changes to the rates of the health element of Universal Credit (UC). You can read RNIB’s full analysis of the proposals here: https://www.rnib.org.uk/news/changes-to-benefits-and-employment-support-what-you-need-to-know/

We’re very worried about the impact these changes could have on blind and partially sighted people if they go ahead. The consequences could be devastating. Life simply costs more if you have a visual impairment and benefits like PIP provide vital support for the extra costs that come with having a disability.

If you receive benefits related to your sight loss, or you don’t but share our concern about the proposals, please write to your MP using RNIB’s simple form: https://change.rnib.org.uk/page/168340/action/1?ea.tracking.id=IC

Retina UK, alongside other sector partners, is working with RNIB following the Chancellor’s Spring Statement. We are adding our voice as part of a sector-wide effort to prevent changes that could harm those most vulnerable in our society.

If you need any support in completing the form, please email campaigns@rnib.org.uk or call the RNIB Helpline at 0303 123 9999.

Martyn Osborne recently became our 21^st Retina UK Lottery winner and he won our biggest cash prize yet! Martyn shared his good news and said:

“I was absolutely delighted to receive the news that I had won £1,000 in the Retina UK Lottery! It was such a wonderful surprise and I’m grateful that my entry has contributed to the support Retina UK provides to those affected by inherited sight loss. Winning this prize has been an added bonus, and I plan to put the money towards a special treat for my family – something we can all enjoy together! I have also donated 10% of the money back to Retina UK. I’d highly recommend taking part in the Retina UK Lottery. Not only does it give you the chance to win, but more importantly, it helps an amazing charity continue its essential work.”

Sign up to play today.

Berkshire Local Peer Support Group
Tuesday 15 April – 7pm to 8pm – Online
Come and join James and the group for their latest online social catch up.

Men’s Peer Support Group
Thursday 17 April – 7pm to 8.30pm – Online
Come and join us for our latest Men’s Peer Support Group social catch up.

Parents & Carers Peer Support Group
Wednesday 23 April – 7pm to 8.30pm – Online
Are you a parent or carer of a child or young person living with an inherited retinal dystrophy? Our group provides a fully inclusive, welcoming space to bring families together, to share experiences; hints; tips; coping strategies, and ideas to help you support your young person.

*Save the Date

• Isle of Wight Local Peer Support Group
  Tuesday 6 May – 11am to 1pm – In-person
• Women’s Peer Support Group
  Thursday 8 May – 7pm to 8:30pm – Online
• Merseyside Local Peer Support Group in collaboration with SocialEyes
  Saturday 10 May – 11.30am – In-person
• ‘Talking’ Tech Peer Support Group
  Thursday 15 May – 7pm to 8pm – Online
• Berkshire Local Peer Support Group
  Monday 19 May – 7pm to 8pm – Online
• Belfast Local Peer Support Group
  Saturday 24 May – Time TBC – In-person
• ‘Talking’ Creative Arts Peer Support Group
  Thursday 29 May – 7pm to 8pm – Online
• Manchester Local Peer Support Group
  Saturday 31 May – 12pm to 5pm – In-person
• Isle of Wight Local Peer Support Group
  Tuesday 3 June – 11am to 1pm – In-person.

Please note that some of the ‘save the dates’ may be subject to change – for more information and to be kept up to date with peer support group activity please visit the Events page on our website – https://retinauk.org.uk/information-and-support/services/local-peer-support-groups/

We’d like to wish our inspirational #TeamRetinaUK runners all the best for this month’s TCS London Marathon, taking place on 27 April. You can make a donation to one of our runners here and you can watch the live coverage on BBC One on the day too. If you’re inspired to take on your own challenge for Retina UK in our 50^th anniversary year, visit our website today.