Retina UK supports people affected by inherited progressive sight loss and invests in medical research to ensure that people an lead a fulfilling life, now and in the future.
In this episode, we're joined by two of our wonderful volunteers, Kim and Annemarie. They chat with our Communications Manager, Jane, about their experiences with sight loss, what inspired them to volunteer with Retina UK, whilst also discussing what volunteering means to them . They also talk about all the exciting things they get up to in their peer support group meetings.We hope you enjoy the conversation!
We know a lot of people are concerned about the proposed changes to the Personal Independence Payment (PIP) that were announced at the end of March. Much of the proposal forms part of a wider consultation with the Department for Work and Pensions.Hear from our Special Project Lead, Matthew Carr, in this webinar about Influencing with Retina UK to learn more about the proposals, Retina UK's position and how you can make sure your voice is heard by your MP and in the consultation. Matt also talks about different ways that you engage with politicians on both a local and a national level.
The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monhtly or quartely direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442
In this podcast, our Research Development Manager, Kate Arkell, talks to health economics researcher Rebecca Rosi from Bangor University, who is aiming to investigate which support services are available and which are most beneficial to people living with RP.
The London Marathon 2025 is fast approaching and our #TeamRetinaUK runners are well underway with their training and fundraising!In this inspiring session, our marathon runners 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.Don't miss out on this chance to be inspired by their determination, passion, and commitment to making a difference. Whether you're an avid runner, a supporter of Retina UK, or simply looking for motivation, this webinar is for you!
The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monhtly or quartely direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442
Join us for our next webinar which is an exploration of a community members experiences of genetic testing with input from a genetic counsellor.If you would like more information on genetic testing, you can head to our website where you will find guidance on how genetic testing may help you and your family discover more about your inherited sight loss condition and how to unlock choices. The page can be found here: https://retinauk.org.uk/genetics/If you would also like to watch Rob's video, that can be found here: https://retinauk.org.uk/genetics/genetic-testing/
Join Lauren as she chats with Paula McGrath, Deputy CEO of Retina UK, about the 2025 Sight Loss Survey - why it matters, how your voice can drive real change, and how you can take part.Every three years, we carry out this survey to ensure our work continues to meet the needs of our community. Your voice matters, and we need your input to shape the future of our services, campaigns, and advocacy efforts for those living with inherited sight loss. The survey should take approximately 40 minutes. You can either complete it online by visiting RetinaUK.org.uk/survey, 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 deadline for completed surveys is Friday 25 April 2025. If you have any questions, please email info@retinauk.org.uk.
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2025 (Issue 185). You can download a copy in PDF and Word format on the Retina UK website: RetinaUK.org.uk/resources.Contents in this edition are as follows: Tell us about you – Tina Garvey You can influence positive change A golden opportunity for your workplace Marking 50 years of Retina UK Experimental therapy by Retina UK funded researchers leads to ‘life changing improvements' A passion for genetic engineering Dates for your diary With opportunity, support and determination, anything can happen Research round-up From bake sales to challenges – get involved in 2025! Finding a place to thrive Thank you Help us raise awareness and vital funds in 2025 Paid Advertisement from: Seable Holidays for Blind and Partially sighted
The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monhtly or quartely direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442
At Retina UK, we believe that together, we can make a real difference in the lives of those affected by retinal conditions. That's why we're inviting you listen to our webinar, "Together We Can: Ways You Can Get Involved!" – your guide to exciting fundraising opportunities in 2025. Whether you're a seasoned fundraiser or new to supporting us, this webinar is packed with ideas and inspiration to help you get involved. From taking on iconic challenges like marathons and walks to hosting your own events, we'll explore a variety of ways you can contribute to raising awareness and vital funds for research into inherited retinal diseases. Listen to hear from members of our fundraising team, meet passionate supporters, and learn how you can make 2025 the year you take action and make a lasting impact.
In this podcast we talk to Dr Jasleen Jolly, Associate Professor at Jolly Vision Science and Honorary fellow at Melbourne University. We are also joined by Yvette Chivers, Helpline Coordinator at Retina UK, who is living with Retinitis Pigmentosa (RP) and experiences CBS.Charles Bonnet Syndrome is phenomenon where some people with sight loss experience visual hallucinations. Tune in to find out more about CBS, Yvette's experience and the work that Dr Jasleen Jolly is doing.Researchers at Cardiff University are currently looking for participants to take part in a 60 minute online survey about experiences of Charles Bonnet syndrome, which is open to anyone with sight loss, regardless of whether they experience hallucinations. The survey asks about the nature of your visual impairment, your experiences of CBS (if any), and your visual imagination. For more information, visit https://tinyurl.com/sight-impairment-study.
We are joined today by Tina Garvey, Chief Executive Officer at Retina UK. In this episode we reflect on the year 2024, taking a closer look at some of the most significant milestones and achievements for Retina UK, as well as the challenges we faced. We also explore the lasting impact Retina UK has had on the community, and look ahead to the exciting projects in store for 2025.
We're excited to announce that Mark Baxter, our Information and Support Coordinator, will be sharing his experience of his holiday to Las Vegas, where he attended the CES 2025! CES is the world's leading tech event, showcasing the latest innovations that could transform the lives of people with vision impairments. Hosted by Matthew Carr, Mark will discuss the cutting-edge technologies he encounters at CES that have the potential to impact those with retinal conditions. 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.
The latest e-Newsletter from Retina UK. Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit www.RetinaUK.org.uk/regular-giving/ to sign up, or, if you prefer, call us on 01280 821334.
Joining us for an "Ask the Expert" session is Dr Roly Megaw who is currently supervising a Retina UK/Macular Society PHD studentship and has received other Retina UK Research funding in the past.Dr. Megaw, answers your burning questions on inherited retinal conditions, the latest research, and much more. Whether you're living with a retinal condition or supporting someone who is, this webinar is full of valuable insights you won't want to miss.
Chris and Dianne's #Strictly journey has been incredible to watch. We chat with Alan and Lucille who are both blind. They have both been dancing for a number of years. Find out more about why they enjoy it. How they manage to dance with low or no vision and what their thoughts about Chris and Dianne's chances in the final this weekend.
The latest e-Newsletter from Retina UK. Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit www.RetinaUK.org.uk/regular-giving/ to sign up, or, if you prefer, call us on 01280 821334.
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2024 (Issue 184). You can download a copy in PDF and Word format on the Retina UK website: RetinaUK.org.uk/resources. Contents in this edition are as follows: A landmark anniversary on the horizon (Tina Garvey) Time for learning and connecting Join our Gene Team this Christmas A unique perspective Sharing stories and experiences Thank you Research round-up Information and support in a way that works for you Join our wonderful team of volunteers Make your voice heard The end of an era Sign up for an adventure of a lifeline! Join #TeamRetinaUK in 2025! Paid Advertisement - Talking Watch Shop Festive Fundraising Transforming research, transforming lives
Hear our innovative research grantees discuss their projects and the exciting progress they are making, and see how your gift can make a real impact this Big Give. Our panel includes Professor Majlinda Lako: Professor Majlinda Lako is the co-director of regenerative medicine stem cells and transplantation at Newcastle University. Professor Lako is a member of the Biosciences Institute and her work contributes to the Regenerative Medicine, Stem Cells and Transplantation research Theme. She is also part of the Neuroscience NUCoRE. Professor Jacqueline van der Spuy: Jacqueline van der Spuy is a Professor of Molecular and Cellular Biology at the UCL Institute of Ophthalmology, which she joined as a Wellcome Trust Travelling Research Fellow in 2000. Jacqueline's research aims to understand the molecular basis of and develop treatments for inherited retinal dystrophies (IRDs). Professor van der Spuy is currently supervising PhD student Gabriel, whose project explores the potential use of prime editing as a route to treating Stargardt disease. Elena Piotter, DPhil Student and Retina UK / Macular Society Scholar: Elena completed her Bachelors in International Relations (BA) and Global Disease Biology (BSc) at the University of California, Davis. She is currently pursuing her Masters in Molecular Biology at the Reijksuniversiteit Groningen, for which she is undertaking a research project as an Honorary Academic Visitor in Professor Robert MacLaren's lab. Her project focuses on utilizing CRISPR-Cas9 in addressing degenerative eye disease.
Join us in this exciting episode of the Retina UK Podcast as we introduce our new chair, Kathy Evans. With a wealth of experience and a passion for supporting those affected by retinal conditions, tune in to learn more about her background, her commitment to advocacy, and the innovative initiatives on the horizon for Retina UK.
Join our Senior Fundraising Manager, James Clarke, as he chats to three wonderful volunteers about what they got up to on Thursday 10 October, our very first Retina UK Day. From cake sales, to quiz nights to even radio shows, Retina UK day was an incredible day. Thank you to all that took part.
The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: https://retinauk.org.uk/get-involved/mailing-list/. Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit Retinauk.org.uk/get-involved/donate/ to sign up, or if you prefer, call us on 01280 821334
This Impact Report is available in accessible PDF and plain text on the Retina UK website: RetinaUK.org.uk/resources.
Join us for an inspiring webinar where four artists share their creative passions and journey with sight loss. In this session, you'll hear from four artists: Tina, our gifted Christmas card designer, will share her journey of creating intricate and beautiful designs. Adrian Paternoster, a skilled artist, will offer insights into his craft, where he uses paints on canvases. Rob Sears, a content creator known as “Blind Focus with Rob Sears”, will discuss his process for creating content online to share about his journey with RP. Jay Seymour, a digital media enthusiast and video creator. He makes videos for social media, including short films and sketches. This webinar is designed for anyone with an interest in the arts, whether you're an artist yourself or someone who appreciates creative expression. Both artists will discuss their process of how they create their art, even showing us some of their creations! Attendees will gain unique perspectives on how visual impairments can influence and enrich artistic practices, turning potential obstacles into opportunities for creativity.
Professor Graeme Black, Chloe Brotherton, Gabriel Velichkova, Dr Panagiotis Sergouniotis, Kate Arkell (Retina UK)
An overview of the latest promising research. Professor Graeme Black
Our three new PhD student grantees, funded by donations, will share their findings. Chloe Brotherton, Hassina Zeriri, Gabriel Velichkova, Kate Arkell (Retina UK)
Our panel of lived experience volunteers and service users explain the positive impact peer-to-peer support has had on their lives. Paula McGrath (Retina UK) leads a panel session
How this new guide and Retina UK can help you to access information, support and advice to help you live your best life. Helen Doyle (RNIB), Denise Rawden (Retina UK), Bhavini Makwana (BAME Vision)
Practical advice on how you can offer inclusive services for people with inherited sight loss. Stephen Kill, Rebecca Lunness & Joanne Kennedy (SeeAbility), Terri Balon (RNIB), Bhavini Makwana (BAME Vision)
Exploring the outcomes of an in- depth study on the impact of retinitis pigmentosa (RP) on patients and family members.Matias Segovia (Oxford Eye Hospital), Kate Arkell (Retina UK)
Our panel of lived experience volunteers and service users explain the positive impact peer-to-peer support has had on their lives. Paula McGrath (Retina UK) leads a panel session
How we can enable families to get the information, support and advice they need to live their best lives at all stages of their sight loss journey. Helen Doyle (RNIB), Denise Rawden (Retina UK), Bhavini Makwana (BAME Vision)
This leaflet is available in audio, PDF and Word formats. If you would like to access the leaflet in one of the other formats, please visit RetinaUK.org.uk/resource/profs-leaflet/
The latest e-Newsletter from Retina UK. Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit www.RetinaUK.org.uk/regular-giving/ to sign up, or, if your prefer, call us on 01208 821334.
If you would prefer to download a copy of the programme in PDF or Word (plain text), please visit: RetinaUK.org.uk/event/annual-conference/
If you would prefer to download a copy of the programme in PDF or Word (plain text), please visit: RetinaUK.org.uk/event/professionals-conference/
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2024 (Issue 183). You can download a copy in PDF and Word format on the Retina UK website: RetinaUK.org.uk/resources. Contents in this edition are as follows: TRACK 2: Our Annual Conference is heading north (Tina Garvey) TRACK 3: Our ever-popular Annual Conference heads north TRACK 4: What's On TRACK 5: Supporting you to support the inherited sight loss community TRACK 6: Annual General Meeting notice 2024 TRACK 7: New ‘Tech Selector' tool TRACK 8: Have you joined our weekly Lottery? TRACK 9: Connecting young people TRACK 10: Take on a challenge TRACK 11: Sign up now for Retina UK Day 2024 TRACK 12: Facebook fundraising TRACK 13: Research round-up TRACK 14: Support Retina UK and secure your legacy TRACK 15: A job well done TRACK 16: Thank you TRACK 17: Spotlight on a funded research project: retaining central vision in RP TRACK 18: A focus on Usher syndrome TRACK 19: Support us to help more people on their sight loss journey
Join Research Intern Aysha in conversation with Research Development Manager Kate and Communications Manager Jane as they take us through the history of the charity, why we are called Retina UK and what conditions we support. Don't miss out on this informative podcast!
Hosted by Retina UK's James Clarke and Aysha Ahmed, this session is in conversation with 3 young adults, who have turned challenges into triumphs. Listen to their gripping journeys and exciting plans for the future. Discover the power of peer support and connect with a community that understands. Guest Speakers: Karolina Pakenaite: An inspiring adventurer and PhD student aiming to be the first deafblind person to climb Mount Everest. Ryan Taylor: A determined young man with rod-cone dystrophy, overcoming challenges and excelling in his career and personal life. James Moore: A resilient 24-year-old with retinitis pigmentosa, navigating life optimism. Whether you're living with inherited sight loss or supporting someone who is, this event will leave you empowered and uplifted. Don't miss out on this journey of resilience and strength!
Listen to Matthew Carr, Special Projects Lead at Retina UK as we discuss accessible voting during the general election. Please find resources mentioned in this episode below: Call the Helpline: +44 0300 111 4000 Email the Helpline: helpline@RetinaUK.org.uk RNIB: https://www.rnib.org.uk/get-involved/support-a-campaign/voting-and-elections-what-you-need-to-know/ Accepted forms of ID: Accepted forms of ID
The latest e-Newsletter from Retina UK. Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit www.RetinaUK.org.uk/regular-giving/ to sign up, or, if your prefer, call us on 01208 821334.
During Loneliness Awareness Week, we're hosting a special webinar to address the challenges faced by individuals with sight loss when it comes to travel and mobility. Research by RNIB has highlighted the critical need for enabling greater fulfilment and freedom through travel, with a significant impact on quality of life. According to their findings, 59% of respondents felt that exploring different parts of the country had a huge positive impact on their well-being, yet a lack of confidence often leads to loneliness and isolation. Join us for an informative session designed to help build your confidence in traveling and overcoming barriers associated with sight loss. Our expert panel includes: Simon Labbett: Chair of the Rehabilitation Workers Professionals Network. Simon will share invaluable hints and tips on how to navigate your surroundings and boost your confidence in travel. Angie Baum: Development Intern living with retinitis pigmentosa (RP). Angie will share her inspiring story of overcoming travel fears with the help of her guide dog, Norma. Richard Zimbler: Co-facilitator of our ‘Talking Travel' online group. Richard will discuss various aspects of travel, from everyday errands to adventurous trips across the country and abroad. Don't miss this opportunity to gain practical advice and support to help you move more freely and confidently.
Did you know May is National Walking Month? As part of Mental Health Awareness Week, we're exploring the power of movement. As the weather turns warmer and we are happier venturing out a little more, we look at the activities that some of our communities are getting involved with. Getting out in the fresh air is good for sole, in fact 'movement' is the theme of this year's Mental Health Awareness Week. 5KADayInMay: hear how participants of this monthly challenge are taking on this challenge. Benefits of movement on mental health. Different types of movement – whether that's putting on your dancing shoes, riding or a maybe some gentle gardening. Being active in the community. Self-care.
Have some questions about the Big Give Kind2Mind campaign? Listen to our Head of Fundraising Jo, as she discusses more about the Big Give. From how to donate to why this campaign is a game changer for us.
The latest e-Newsletter from Retain UK. Please consider donating to Retina UK through a monthly or quartely direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
Join Research Development Manager, Kate Arkell as she speaks to our latest research grantees about their projects. PhD studentship: Dr Matteo Rizzi, UCL Institute of OphthalmologyInvestigating photopsia and photophobia in Stargardt disease. PhD studentship: Chloe Brotherton, Edinburgh UniversityUnderstanding why different RPGR gene mutations can lead to different diagnosis. PhD studentship: Gabriel Velichkova, UCL Institute of OphthalmologyInvestigating Stargardt disease as a target for gene repair. Professor Jacqueline van der Spuy, UCL Institute of OphthalmologyThe consequences of toxic accumulation of a molecule called cGMP in Leber congenital amaurosis (LCA). Professor Jane Sowden, UCL Great Ormond Street Institute of Child HealthRestoring some vision at the later stages of sight loss in advanced retinitis pigmentosa (RP) using a stem cell patch.
The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: Join our mailing list - Retina UK
Join the fun and support a great cause. Our Weekly Lottery has now arrived. This podcast aims to answer any questions you may have and encourage you to take part. RetinaUK.org.uk/lottery
This webinar was broadcast live on Thursday 21 March 2024. It is available in video format on our YouTube channel: https://youtu.be/oF5DP6XUsXk Have you ever been tempted to take part in the TCS London Marathon? In 2022 the TCS London Marathon raised £58.3 million for charity so it's a vital source of income. Our Events and Community Fundraising Manager, James Clarke, talks to three of our 2024 runners about: - their motivation for taking part - their connection to Retina UK - the different ways in which they've been fundraising - what they are most looking forward to (or apprehensive about) for the big day. Find out about our upcoming webinars on our website: RetinaUK.org.uk/webinars.
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