Macular Society Newsletter

The latest newsletter from the Macular Society is out – you can read it here

Here are the headlines from this newsletter:

‘Inspiring’ pop singer and Macular Society patron Vince Hill dies age 89
We pay tribute to our much-loved patron, pop singer Vince Hill who has sadly died at the age of 89. Vince, who is best known for his cover of hit song Edelweiss which featured in The Sound of Music, has died peacefully at his home in Henley-on-Thames. He was a great supporter of the Society and he will be sorely missed.

Consultation to close railway ticket office extended
Thanks to your support a consultation into the plan to close hundreds of ticket offices in England is set to be extended, following opposition from passengers, unions and disability charities. It’s not too late to have your say over the closures and how they would affect you.

“Sight loss does change your life, but it’s not the end of your life”
Receiving a diagnosis of macular disease can be overwhelming and bring about a whirlwind of emotions. Hear from Kate, Louise and Pat, who have all lived with macular disease for several years, share their tips on dealing with a diagnosis and maintaining independence.

“It’s not about what you can’t do, but what you can do that matters”
From working as a volunteer football coach at one of the Premier League’s top clubs to advising ministers at the heart of Government, Jonathan tells us why he has never let Stargardt get in the way of his varied career.

Are you receiving timely injections?
We’re increasingly concerned about reports of treatment delays patients with treatable macular conditions are experiencing across the UK. We would be extremely grateful if you could help us to understand the scale of the problem. Whether you are experiencing delays, or getting your treatment on time, please share your experiences, or those of a family member or loved one, so we can continue to lobby for vital changes.

Understanding the psychological impact of a macular disease diagnosis
Dr Jasleen K Jolly, from the Vision and Eye Research Institute at Anglia Ruskin University, will join us this month to discuss her latest research into Charles Bonnet syndrome (CBS). Join us to find out more about how Dr Jolly is furthering our understanding of the condition.

Overcoming barriers to employment
Zsuzsi Szabo, an employment manager from Support4Sight in Essex, will join us later this month to talk about the barriers to employment for people with macular disease. Zsuzsi will discuss the challenges employers may encounter when hiring someone with sight loss, and whether these barriers are real or perceived. Join us to find out how partially sighted job seekers can overcome these barriers.

Macular Society Conference 2023
Our annual virtual conference, ‘Hope for the future’, is only one month away. Hear from the experts in macular disease who will share the latest developments in research and treatments, as well as practical advice for living with macular disease.

A chance to put your questions to an ophthalmologist
OcuPlan, a valued partner of the Macular Society which offers care plans for people with macular disease and other eye conditions, will be hosting a one-off webinar this month. The event takes place on Monday 14 August and will be hosted by Dan Calladine, OcuPlan founder and leading consultant ophthalmologist. Mr Calladine will cover common questions he’s asked in his clinics and will give you the chance to ask him any questions.

The impact of digital exclusion – share your views
A digital health company, which is developing an app to enable people with macular disease to monitor their vision from home, is looking to understand more about digital exclusion of people living with macular disease. Okko Health is asking for your help to improve the usability and accessibility of the app, by completing a short survey.

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