Putting a stop to sight loss

However, for this to be achieved there needs to be a marked change of narrative when it comes to the way sight loss is discussed, Mr McNamara states. “There seems to be a very worrying perception in society that once you have lost your sight, what you require is care and support,” he explains. 

“But actually, what people with sight loss, or at risk of sight loss, want is for it to be halted in its tracks and disease to be stopped before it starts,” he added. 

While this conversational change may seem like a big one, the director points out: “We are working from this perspective when we talk about cancer and Alzheimer’s, for example, so why wouldn’t we take this perspective for sight loss?”

Research ready

According to the statistics, there are over two million people in the UK with sight loss, but many are living with a condition for which there is currently no treatment. 

Since its establishment in 1965, Fight for Sight’s mission has been to stop sight loss, which it still strives for today. 

The charity awards over £3 million each year to researchers across the UK, and is currently funding 159 research projects at 44 different universities and hospitals.

Over the years, a number of Fight for Sight-funded projects have experienced success. An example of this is the establishment of the Tommy Salisbury Choroideremia Fund, Mr McNamara shares. 

“There are a range of success stories, but one that really springs to mind is around the inherited disease, choroideremia, for which there have been massive developments over the last decade,” he said. 

As a rare inherited disease that causes severe sight loss in men, there is no treatment for it. 

However, in 2008, Fight for Sight awarded £300,000 to a research project into the condition led by Professor Miguel Seabra at Imperial College London. The professor’s work was fast-tracked by the grant and played a key role in identifying the function of the protein REP-1, which causes choroideremia.

Professor Seabra went on to collaborate with Professor Robert MacLaren at the University of Oxford, who subsequently received a £1.1million grant to conduct the world’s first clinical trial of a treatment for choroideremia. 

Six months after treatment with this therapy, the first six patients reported that their vision had improved in dim light. Two of the six were also able to read more lines on the eye chart. The success was significant and resulted in the establishment of NightstaRx, a company that has raised over $157m, which aims to bring gene therapies for inherited eye diseases into the clinic.

While this is just one story from many examples that Fight for Sight could share, what it demonstrates is the importance of funding very early stage research. 

Fight for Sight was the catalyst for the successes that have unfolded in terms of finding a treatment for choroideremia, Mr McNamara highlights. “If we were not there in the beginning, venture capitalists, private investors, nor the Government would have seen this as an area that they felt comfortable funding research it,” he said.

"The reality is that we are working towards ending cancer, and we are trying to stop dementia, and eradicate HIV, so why should we not want to end sight loss?"

Selection processes

Just as the research environment has developed, so too has Fight for Sight. When it comes to selecting the research projects that it takes forward in a very over-subscribed arena, it will always ask itself ‘Is this what patients want?’

“Our connection to patients is so important,” Mr McNamara emphasised. As a result, a few years ago the charity brought together patients, eye health professionals and involved over forty organisations and asked them what their priorities were when it comes to eye research. 

In translating these priorities into practical action, Fight for Sight realised the importance of collaborating with others in order to bring about change. This can be seen through its growing partnerships with organisations from the Birdshot Uveitis Society and Nystagmus Network to Thomas Pocklington Trust, Alzheimer’s Research UK and the Royal College of Ophthalmologists, to name but a few. 

In 2017, the charity agreed a record number of partnerships with 15 fellow charities and organisations. 

Discussing the importance of partnerships, Mr McNamara explained: “Many people living with sight loss are also living with other long-term conditions, such as diabetes. These partnerships are raising the profile and the benefits of eye research into neglected and forgotten diseases, demonstrating that now is the time for eye research to step out of the shadows as it has huge potential to make a difference.”

Looking forward 

Mr McNamara is confident in his belief that sight loss can and should be halted because of the innovation that he has observed in research over the last decade.

“When you look at the developments in stem cell research and gene therapy over the last decade, as well as the role that technology now plays, you can see the potential for how we can realistically set out a clear ambition to end sight loss. Take gene therapy, for example, it is the here and now in eye research and we must be ambitious and grasp this opportunity to progress the breakthroughs in research,” he said. 

The changes that Fight for Sight is implementing are being done in order to make sight loss a thing of the past and for Mr McNamara this is the perfect outcome.

“People may question this belief and say that it is not possible,” he said, “but I truly believe it is. The reality is that we are working towards ending cancer, and we are trying to stop dementia, and eradicate HIV, so why should we not want to end sight loss?”

“It won’t happen overnight,” he admits, “nor probably in the next 10–15 years,” he adds. “But we can make significant progress towards achieving it, and that can only be to the benefit of patients,” he concluded.