Macular Society Newsletter – April 2023

Welcome to your April e-newsletter. We hope you had a lovely Easter and that you managed to get some sunshine – although it’s never guaranteed with our unpredictable weather!

While we can learn to live with never knowing what to expect from the weather, none of us can accept the uncertainty that delays in treatment cause. You may have seen the news this month of patients with wet age-related macular degeneration experiencing those delays. And while this is concerning, your support makes it possible to tackle this issue and to affect change. Read Pam’s story below to find out why speaking out really does make a difference. Thank you again for all you do to help Beat Macular Disease. Your support means the world.

New drug for dry AMD – your questions answered
In February we shared the exciting news that the first-ever drug to treat dry age-related macular degeneration (AMD) has been approved in the US. With the support of Apellis Pharmaceuticals, which has brought the drug to market, we answer your most frequently asked questions.

Treatment delays – “It’s vitally important to speak out”
Stories of delays to vital treatment for age-related macular degeneration (AMD) have been hitting the headlines over the last few weeks. While the news is concerning for many people affected, Pam, who was diagnosed with wet AMD in 2021, has shared why she has spoken out about her own experiences to the national press and why she would encourage others to do the same.

Workforce Census illustrates severe shortage of eye doctors
A concerning report from The Royal College of Ophthalmologists reveals the shortage of eye doctors in the UK and the extent of pressure on NHS ophthalmology services. Policymakers across the UK are being called on to act on the workforce shortages with urgency.

‘Inspirational’ Ann, 99, sets out to complete marathon walking challenge
Ann, who was diagnosed with dry age-related macular degeneration (AMD) 30 years ago, is celebrating her 100th birthday by walking the 26.2 miles distance around her local running track. She tells us: “I want to show that even though someone is losing their sight they are still able to do something to help others going through it.”

What are biosimilars and what could they mean for you?
Professor of Ophthalmology Richard Gale from the Hull York Medical School, will be joining us for our April My Macular and Me webinar, to discuss the introduction of biosimilars on the NHS and what this means for you.

Reading made easier
Our second My Macular and Me webinar of the month welcomes Howard Moshtael, the founder of BrightPage, a tool which can scroll text in a natural way for reading and boost the reading speed of people with sight loss. Howard will talk about the tool in more detail and how you can try it for yourself.

“I wanted to do something to challenge myself”
Jan was diagnosed with dry AMD ten years ago and in 2022 set herself the challenge of running the London Marathon for the first time, joined by her daughter, Emma. The pair will be two of the six people taking on the challenge in support of the Macular Society later this month.

Changes to voting affecting blind and partially sighted people
Will you be voting in the local elections next month? New rules for voter ID brought in by the UK Government have been widely criticised, with fears they prevent people with sight loss from exercising their democratic right to vote. We lay out the new rules and what they mean for you.

Do you like a good chat?
Our telephone befrienders are volunteers who provide a regular friendly phone call to people who might be feeling lonely or isolated. These calls can help to rebuild confidence and independence – and give you both something to smile about. If you’re friendly, reliable and enjoy a good chat, then why not get in touch?

Join us and Beat Macular Disease
Join as a member for a six-month free trial and receive your exclusive members-only magazine packed with research updates, expert advice and tips for living with macular disease. Sign up for your membership today!

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