01 Fight for Sight is now the UK’s largest national charity dedicated to funding eye research.
Founded in 1965 by ophthalmic pathologist, Professor Norman Ashton, the charity has grown hugely over its 50-year history with many key achievements that have benefited those with sight loss. Today is the product of the merger between two charities – Fight for Sight and the Iris Fund (formerly known as the Prevention of Blindness Research Fund).
Fight for Sight is a member of the Association of Medical Research Charities (AMRC), which provides guidance and best practice for awarding research grants. As an AMRC member, all research projects that we fund can receive support through the government’s Charity Research Support Fund to help fund the indirect costs of research at universities. This is very important to us as we can tell our donors that their donations are spent directly on research not on university overheads.
02 Currently we invest around £3–4m into eye-related research annually.
This amount has almost doubled since Fight for Sight merged 10 years ago. While this demonstrates a healthy growth for a charity that relies solely on public funding, it is a drop in the ocean as there are nearly two million people in the UK with some form of sight loss. In the past few years we have seen significant advances in science, medicine and technology helping to bring us closer to preventing, treating and reversing sight loss. This pace of change has never been so exciting or so rapid and new treatments such as stem cells and gene therapies are now being tested in clinical trials for eye diseases.
Over the past few years we have developed partnerships with other charities in the eye sector as well as the MRC and the Fulbright Commission.
An example of the benefits that collaboration can bring is the RP Genome Project – a partnership with RP Fighting Blindness, a charity focused on inherited retina disease, which affect one in 3500 people in the UK. The project is working on giving a genetic diagnosis to all affected and establishing a database of all people in the UK with a genetic diagnosis so that when a suitable trial becomes available, they can be approached.
03 We offer a wide range of grant schemes, including PhD studentships, small grants, project grants, an early career investigator scheme and clinical fellowships.
The grants are highly competitive and we receive many more worthwhile applications that we are unable to support due to lack of funds. In our current Research Strategy 2012-17 we have six clear research priorities, which are understanding disease; developing new treatments; early diagnosis and detection; prevention of disease; rehabilitation; and new and emerging threats to society. All of our funded research must address at least one of these priorities.
To provide insight into the work of Fight for Sight, we are currently funding around 150 ongoing projects at 35 different universities and hospitals across the UK. This takes our current research commitment to around £8.4m.
04 In 2005 Emma Salisbury approached Fight for Sight to establish a fund to raise money for research into an inherited eye disease, choroideremia.
While it is a rare condition affecting around one in 50,000 males, Emma’s grandfather had lost his sight as a result and she knew that her four-year-old son, Tommy, had the condition and she didn’t want him to go blind.
In partnership with Fight for Sight, the Tommy Salisbury Choroideremia Fund was established. Over the last 10 years, Emma and her family have raised in excess of £450,000, which is amazing.
Initially the Fund supported Professor Miguel Seabra’s research at Imperial College London into furthering our understanding of the function of the protein produced by the causative CHM gene. This enabled a collaboration between Professors Seabra and Robert MacLaren, at the University of Oxford, leading to the world’s first gene therapy trial for choroideremia, which is showing really promising results. The University of Oxford spun out a company, called NightstaRx, ,which has attracted a £17m investment from a subsidiary of the Wellcome Trust and a further $35m investment from a world leading venture capital firm to bring gene therapies for inherited retinal diseases to market.
This is a great example of how a very small amount of money and the power of a patient and their family to fundraise and get research off the ground, which can leverage a lot more funding from other sources.
05 In 2013 Fight for Sight launched the Sight Loss and Vision Priority Setting Partnership report.
Developed through a consultation that was guided by the James Lind Alliance, the project was focused on finding out what people who have experience of sight loss, and eye healthcare professionals want research to address.
We now know what research priorities are important to patients and eye healthcare professionals and we are encouraging funders of eye research to include these priorities in their grant application process.
Having set those priorities a few years ago now, the next steps involve mapping what has been so far achieved by us and other funders of eye research including the NIHR, so that we can feedback to the public what is being done to address these priorities.
06 In September 2014, Fight for Sight launched its Speaker Network.
Fight for Sight’s senior advisor, Julian Jackson, who has an inherited retinal disease which has left him blind, set up the Network to help raise awareness of sight loss and the value of eye research. It is essentially a growing community of both patients and world-class, UK-based researchers and clinicians. There are around 135 people in the Speaker Network currently, and while many of those will be researchers supported by Fight for Sight fund, others will be people who are interested in raising the profile of eye disease and the charity. Members of the Network give talks about their research to patient groups and at meetings, conference and events.