Fight for Sight and Moorfields Eye Charity launch large-scale research project

24 February 22

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Fight for Sight and Moorfields Eye Charity are launching a large-scale research project which will investigate rare sight loss conditions caused by CRB1 gene mutations, one of which can severely affect young children.

Leber’s Congenital Amaurosis (LCA) is a rare hereditary eye condition affecting two or three people in every 100,000. It affects the photographic plate at the back of the eye, meaning images aren’t sent to the brain properly and is diagnosed in the first three months of life. Currently, there’s no cure.

The two charities are joining forces to fund work over the next three years to better understand the LCA and other CRB1 related conditions and help achieve more together for the eye health sector.

In the first two years, the team of researchers, led by Professor Mariya Moosajee, will examine the development of the inherited retinal eye conditions caused by CRB1 gene mutations in 30-40 patients, through state-of-the-art imaging tests.

The researchers will also explore the natural history of the conditions, to further the understanding of how the condition develops, as well as the effects on those affected.

A more child-friendly suite of vision tests have been developed and will be used during the project.  The project will also serve as a trial to verify that these tests could be used across NHS eye clinics in future. Simultaneously, the team hope to identify clinically relevant endpoints to help inform future trials within the vision field.

Professor Mariya Moosajee, consultant ophthalmologist at Moorfields Eye Hospital, will lead the research project.
A real commitment to finding a long-term solution

The partnership comes after a network of families worked with Fight for Sight to set up a dedicated family fund to raise money for research into CRB1 related eye conditions.

Originally set up as Minnie’s Miracle Fund, this developed into the now named Team CRB1 and over the years, the families have been working together, supporting each other and raising vital funds for potentially life-changing research that could lead to new treatments or possibly a cure.

Thanks to their incredible fundraising, which has so far raised over £88,000, Team CRB1 have been instrumental in the jointly funded research project with Moorfields Eye Charity.

The families now look set to make an even bigger impact on the lives of people living with sight loss.

Led by parents Caroline and Mark Fogg, whose daughter Minnie was diagnosed with LCA at three months old, the team has been determined to raise as much money as possible to fund research into the condition.

Minnie Fogg smiling
Minnie Fogg, who was diagnosed with LCA at three months old

Caroline said: “Vital research needs to happen now to help preserve and prevent deterioration of the limited sight of our kids and family members. Our aim is raising funds and awareness to help give our little ones a future they can actually see as well as live, feel, smell and touch.”

Keith Valentine, Chief Executive at Fight for Sight, said:

“We are so proud to be working with Moorfields Eye Charity again. This marks a real commitment to finding a long-term solution that works for families and children all over the UK. Together, we can achieve so much more. We are also incredibly inspired by the determination of our fantastic Team CRB1. The families have created this wonderful supportive community that is laser-focused on doing all they can to help fund research, from taking part in gruelling physical challenges, to managing all the day-to-day planning to get to this point. I can’t quite put into words how proud we are in seeing their drive to make real change. Working with some of the best of eye research talent, we aim to give them and many other families real hope. We look forward to seeing the results.”