In March 2018, we were delighted to welcome Fight for Sight to our national alliance of over 200 patient organisations. Fight for Sight is the UK’s leading eye research charity, funding pioneering research to stop sight loss caused by both common and rare eye diseases and conditions.
In this blog, Michele Acton, Fight for Sight’s CEO, talks about the need for innovative research and the importance of medical research charities.
More than two million people in the UK are living with sight loss that has a significant impact on their daily lives. Of these, 785,000 people could improve their vision with prescription lenses. For others it is not so straightforward. There are still many eye diseases and conditions that we are unable to prevent or treat. Only investment in eye research will help us stop people losing their sight.
We know that genetic factors play a role in many sight loss conditions. Research is helping us identify the genes involved including those involved in glaucoma and age-related macular degeneration; two of the leading causes of sight loss that affect us as we age.
The most common causes of blindness in people of working age are inherited retinal dystrophies (IRDs) for which there are currently no treatments available. Thanks to investment in research, over 200 genes have been identified that contribute to sight loss. The last decade has seen the commencement of a number of clinical trials of potential gene therapy treatments and The National Institute for Health and Care Excellence (NICE) will be appraising its first gene therapy treatment, Luxturna, for patients with a mutation in the RPE65 gene, later this year.
Fight for Sight has a long history of supporting research into IRDs. This includes:
- Co-funding the UK Inherited Retinal Dystrophy Consortium (UK-IRDC)
Genetic diagnosis still only detects the underlying cause of IRDs in two thirds of cases. Recognising the need to increase detection, improve diagnosis and improve data sharing, Fight for Sight, alongside RP Fighting Blindness, decided to fund the UK-IRDC. This is a group of clinicians, researchers and scientists based in 8 centres across the UK. To date, the UK-IRDC has identified five novel disease causing genes, enabling diagnoses for more than 250 individuals, the publication of 16 papers and the start of work towards an integrated IRD database.
- Funding crucial basic/ pre-clinical research that led to the world’s first trial of a treatment for choroideremia
Choroideremia is an inherited eye disease that blinds men normally by the time they are in their forties. There is currently no treatment.
Thanks to the Tommy Salisbury Choroideremia Fund at Fight for Sight, we committed to fund vital pre-clinical work at Imperial College London. This enabled Imperial to collaborate with Oxford University to receive a grant from the Department of Health and Wellcome for a Phase 1 gene therapy trial – the world’s first trial of a treatment for choroideremia. After publication of the results of this trial, the Department of Health awarded a grant for a Phase 2 trial. Last month, Nightstar therapeutics announced the commencement of the first ever Phase 3 gene therapy trial for choroideremia.
Being patient-focused, Fight for Sight is able to fund early stage research, de-risking it for others by providing support at proof-of-concept stage. Consequently, significant funding that is necessary to take new drugs through the pipeline to the clinic can be leveraged once there are successes to build on. We aim to invest more in research and drive forward advances that bring us closer to a future in which everyone can see.
You can find out more about Fight for Sight, here.