Dr Neruban Kumaran with his arms folded, he appears to be be smiling and is wearing a dark navy blue uniform. The wall in the background is a dark grey.

Trailblazing gene therapies at Evelina London

Thanks to supporters like you, Evelina London can help bring life-changing gene therapies to children with rare genetic eye conditions.

Why early access to retinal gene therapy matters

When a particular gene affects a child’s eyesight, vision loss happens at different speeds. Retinal gene therapy aims to treat these genes before a patient loses their eyesight which, for children with the AIPL1 gene affected, can be as young as four years old.

Dr Neruban Kumaran says, “It’s devastating because by the time a child is investigated for a condition, then diagnosed and then genetically tested, they can already be past the age of four and by this point they are living predominantly in darkness.”

Supporting the expertise behind pioneering gene therapy

Dr Neruban Kumaran is a consultant ophthalmologist and retinal surgeon who was funded by Evelina London Children’s Charity to carry out specialist surgery on children with an affected AIPL1 gene. As this very rare condition requires intervention before the age of four, it’s a delicate procedure requiring specific expertise.

“To carry this out, you need a few different things. You need to be specialised in delivering gene therapy, have experience doing this retinal surgery on children where everything is smaller, and you also need to know how to prepare the gene therapy in a theatre setting. Then there’s setting up the machinery and knowing where on the retina to treat, which was a big part of my PhD” Dr Neruban Kumaran explains.

All of this led to Dr Neruban Kumaran being selected to carry out this treatment on the biggest group of young patients so far. From October 2023 to June 2024, he operated on both eyes of seven children from around the world, targeting their AIPL1 gene. After recovery, every single child noticed an improvement in their vision.

Why retinal gene therapy is so important

Dr Neruban Kumaran shares, “The reason I’m so driven to do this work is the huge difference it makes to these children. Parents have told me how vision impairment impacts their children socially, how they don’t make friends or join in with activities that other children their age are enjoying. They don’t have the confidence to play and run around. I’ve seen that the first thing a child does after surgery is look at their parent’s face.”

Retinal gene therapy improves vision to such an extent that, although still visually impaired, children can take part in life in ways that their parents never thought they’d be able to.

“These surgeries only happened because of Evelina London Children’s Charity and I’m incredibly grateful. It means so much to these families and to me.”

Dr Neruban Kumaran, Consultant Ophthalmologist and Retinal Surgeon

Together, we can help expert clinicians deliver ground-breaking treatments for children living with rare genetic eye conditions.

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