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“I used to cry in the shower – there was so much anger”

Latest news, posted 13 March 2025

Counselling has been a “lifechanging” experience for Trevor, who hit his lowest point when macular disease began to impact both of his eyes.

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Using Artificial Intelligence to predict AMD progression

Pearse Keane, UCL and Moorfields Eye Hospital - £126,462

September 2019 – April 2022

This project aims to use the power of computers and artificial intelligence (AI) to better understand age-related macular degeneration (AMD). Using eye scans from patients with wet AMD, the researchers want to better understand why and how AMD develops and what causes the progression of wet AMD.

Creating a blood test to detect early AMD

Professor Majlinda Lako, Newcastle University - £229,411

March 2021 – June 2024

Background and project history 

Previous research led by Professor Lako at Newcastle University developed a cell model of age-related macular degeneration (AMD) by turning patient skin cells into retinal pigment epithelium (RPE) cells, a key layer in the macula.
One of the main jobs of the RPE is producing, degrading and transporting proteins that are essential for our vision. If the RPE cells die or get damaged, as seen in AMD, it can cause light-sensing cells (photoreceptors) to die, which is what leads to sight loss.
This previous project by Professor Lako, also funded by the Macular Society, found some molecules that are more abundant in AMD cells compared to healthy cells. These molecules are produced by the RPE and move outside the cells in tiny bubble-like structures, known as exosomes, which help cells to communicate with each other. When AMD is present, the RPE exosomes can potentially be harmful for the photoreceptors.

Switching off the genes that cause Best disease

Dr Amanda-Jayne Carr, UCL Institute of Ophthalmology - £170,000

August 2018 – December 2021

Research summary

Best disease is caused by a faulty gene and leads to permanent sight loss. It’s a dominant genetic disease (meaning that you only need to have one copy of the mutated gene from your parents in order to have the condition). 
This research aimed to switch off the faulty gene and leave the healthy gene remaining to stop the progression of the disease, and the sight loss it causes.

A virtual VI rehabilitation assistant

Professor Chris Dickinson, University of Manchester - £81,449

September 2020 - December 2021

Research summary

Many people with sight loss or macular disease require extra support from eye clinics, charities and low vision services. However, often those who need it most are not aware of the resources available. Professor Dickinson, from the University of Manchester, looked to create a chat-bot assistant to help answer these questions and signpost patients to useful resources.

New treatment option for wet AMD

Dr James Whiteford, Queen Mary University of London - £148,991

May 2019 - April 2022

Research summary

Wet age-related macular degeneration (AMD) can lead to rapid sight loss. We currently have treatments which work well for most. However, for some people, the drugs don’t work. This project looks at a different way to treat wet AMD, which could help them.

How genetic mutations in ABCA4 cause sight loss

Professor Andrew Webster, Moorfields Eye Hospital - £109,432

August 2021 – February 2024

Our DNA contains genes that hold the information and instructions that determine how our cells develop and function. Some genes determine physical characteristics such as eye or hair colour, while others can influence the chance of developing a health condition. 
One example is the ABCA4 gene, which is involved in a number of macular dystrophies, particularly Stargardt disease. Changes or ‘mutations’ to this ABCA4 gene can lead to developing a macular dystrophy. However, a lot of these changes are also seen in people without any sight loss. Professor Andrew Webster’s team at Moorfields Eye Hospital set out to understand why some people experience sight loss and others don’t, even with the same gene changes.

Using technology to aid functional vision

Professor Paul McGraw, Nottingham University - £167,082

December 2019 – June 2024

What’s the problem?

People with macular disease often lose some or most of their central vision due to the deterioration of their macula. To compensate for the loss in central vision, using the remaining peripheral (side) vision is often required. This is called eccentric viewing. 
A key problem is that the areas of the eye used in eccentric viewing are not well suited to fine-detailed tasks. Some people rely on technology like apps, tablets and smartphones to help, although many still have trouble reading and seeing detailed images. It’s thought that changing how these apps display images could improve reading speed, face recognition and fine detail vision (acuity).

Investigating early onset macular degeneration

Professor Graeme Black, University of Manchester - £164,042

April 2018 – September 2021

Creating eye cell models from patients with early onset macular degeneration to better understand causes and possible treatments for both early onset macular degeneration (EOMD) and age-related macular degeneration (AMD).