Macular Society

Like many boys his age, 11-year-old Freddie Tennant is enthralled by his Xbox, playing it when he gets in from school. But while many parents might roll their eyes at their child being so glued to their technology, Freddie's mother, Stacy, encourages him. 'There's so much else he can't do and this brings him joy,' she says.

"I'm optimistic and I’m hopeful. I think we're making progress and I think now is a really exciting time for the field. It's a really exciting time to be joining the Macular Society." This week, our chief executive Ed Holloway appeared on BBC Radio 4's In Touch programme to discuss his vision for advancing research, expanding the Society's support services, and championing the voices of those living with macular disease. Catch the full interview to hear more about the future of the Macular Society and the fight against macular disease.

A recent survey of over 2,000 UK adults found that half of people expect to experience some form of sight loss within the next decade, yet more than a quarter do not have regular eye tests. Conducted by Apellis Pharmaceuticals, the survey aimed to understand public attitudes and perceptions about sight loss. The findings revealed that 90% of people consider sight their most valued sense. Among those surveyed, 53% expect to face sight loss in the next ten years, with this expectation rising to 59% among people over 50. The survey also showed that many people underestimate how common sight loss is. Half of the respondents thought that fewer than one million people in the UK are affected, but the real number is twice that. Alarmingly, over a quarter of people said they did not have regular eye exams, and 34% would delay seeking medical help for more than a month if they experienced vision problems. The survey also found that more than half of the participants believe it would be challenging to prevent sight loss in those over 70. Our chief executive, Ed Holloway, says: "The fact that so many people worry about and fear sight loss highlights that more needs to be done to increase awareness of eye health and the importance of regular eye checks." Read more here: https://lnkd.in/eGqE_Kyn

We’re very grateful to #MacuSaveGold and OcuPlan who are kindly sponsoring our Macular Disease Conference: Hope for the Future, which returns this weekend. From 9.15am-4pm this Saturday, 14 September we’ll hear from the macular disease experts, such as Doctor Jamie Ellingford and Professor Ian Pearce, and you’ll have a chance to put your questions to them live. The online talks will be split between two virtual rooms – inherited retinal disease and age-related macular degeneration – allowing you to dip in and out of the talks, depending on your interest. We’ll be diving into the latest trials and breakthroughs, dietary and nutritional advice and what's on the horizon. From Stargardt disease advancements to the potential of a new dry AMD treatment in the UK, there will be something for everyone. For the full timetables, head to https://lnkd.in/ed9AZVFk - please note times are approximate and subject to change. You can register in advance or simply head to www.macularsociety.org on Saturday, where the link for the conference will go live at 9am. The phone line will also go live at this time. Register for the 2024 Macular Disease Conference: https://lnkd.in/eFaZMSMW Whether you’re joining us by computer, tablet, smartphone or dialing in by phone, we’re really looking forward to welcoming you!

Our phone lines will be down for a few hours this morning (from 10am) as we transition to a more accessible system. During this time you won’t be able to reach us via phone. However, we will still respond to your emails at help@macularsociety.org Phone services will be back online after 2pm. We apologise in advance for any inconvenience and thank you for your patience and understanding.

🔬 How do our genes influence macular disease and how close are we to treating dry age-related macular degeneration (AMD) and Stargardt disease in the UK? These are just some of the topics experts will be discussing at this year’s Macular Disease Conference ‘Hope for the Future’ on Saturday 14 September. Among the many researchers joining the event will be Doctor Jamie Ellingford, who will lead an update on The Manchester Eye Tissue Repository Genome-Transcriptome Project and how genetic changes can lead to macular disease in some people. Others include Professor Ian Pearce who will discuss the new treatments for AMD currently being considered for approval in UK and Europe. Professor Jane Sowden and Owen Jones will also provide an update on research into the use of stem cell-derived photoreceptors for macular repair. From groundbreaking research updates, to diet and nutrition advice and tips for everyday living, there will be something for everyone. And, if you know someone newly diagnosed with macular disease, there is a specially tailored programme to support them and their loved ones too. The free conference will be held online once again, so you can easily switch between sessions. Every talk will also be available to watch on demand after the event. Register now to secure your place at: https://lnkd.in/eFaZMSMW We look forward to seeing you in September! The Macular Disease Conference 2024 'Hope for the Future' is kindly sponsored by #MacuSaveGold and OcuPlan.

A patient advisory group is needed for a Moorfields Eye Charity study looking at the effectiveness, safety and fairness of AI-based eye image testing. Complete the form below if you're interested in the future of AI and how macular conditions are diagnosed. The recruitment deadline is Tuesday, 30 July. Apply below 👇 https://lnkd.in/ejzcgRar

For more than 13 years, Jane has navigated the ups and downs of life with macular disease. In a new series of short films, she is one of three volunteers who has bravely shared her experiences, to help anyone facing a similar diagnosis.   Jane talks about the impact of being told she was losing her sight: “One of my children had a congenital heart disease and had major heart surgery when she was ten months old, and my husband collapsed and died when he was 55 and this has had as much impact on my life as those two events.”   Jane goes on to share her advice for coping with the impact of macular disease: “My biggest tip for coping with emotional difficulties taking on board macular degeneration is to talk to somebody about it. The Macular Society run a very good counselling service and they listen to what you’re saying about how you’re coping with your disease and the frustrations that you’re feeling. It’s really, really vital to know that there is somebody out there that can support you through this really difficult journey.”   To hear more from Jane and how she continues to stay positive, watch the first film in our Living with Macular Disease series.

We're delighted to announce the appointment of our new chief executive. Ed Holloway will join the Macular Society in July, helping to lead us in our mission to Beat Macular Disease. Holloway brings with him a wealth of experience in the charity sector, having served as chief executive of the Bank Workers Society for two years and previously working for the MS Society for 14 years, where he led the transformation of their services to the MS community. In his new role, Holloway succeeds Cathy Yelf, who has led the Macular Society since 2015. With a career spanning over two decades in health and wellbeing charities, Holloway is driven by his passion for the role that charities play in transforming the lives of people affected by health conditions. Reflecting on his appointment, he says: “The Macular Society is an inspiring organisation serving a vital cause, and I look forward to using my experience in the sector to lead the organisation as it continues its essential work.” He recognises the need for advancements in macular disease treatment: "It is such an important cause. With nearly 1.5m people affected in the UK we urgently need to see more progress in research and for macular disease to be given the priority it deserves. He adds: “The organisation's clearly in a really strong position and I hope I can build on its successes and help to make progress towards beating macular disease.” We extend our heartfelt gratitude to Cathy Yelf for her years of dedicated service. Cathy says: “I am delighted Ed is joining the Society and I know it will continue to thrive and flourish under his leadership.” As we welcome Ed, we are excited about the future and the continued growth and impact of the Macular Society.

On behalf of the UK Ageing Research Funders' Forum (UKARFF), we've created a short survey to better understand researchers' training needs. If you can spare a couple of minutes, you can complete it here: tinyurl.com/4ptbhtya The survey closes on 20th May.