Meet our community: James Clarke
Aged 20, James was diagnosed with retinitis pigmentosa at a routine eye appointment in September 2015 and registered partially sighted, just prior to buying his first car and taking his driving test.
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Meet our community: Mark Baxter
My name is Mark Baxter and from an early age I was diagnosed with a deteriorating retinal eye condition called retinitis pigmentosa or RP for short, which will slowly lead to blindness.
Meet our community: Simon Lakin
Simon talks about his experience of genetic testing and counselling.
Meet our volunteers: Joe Rizzo-Naudi
Our amazing volunteers are diverse in age, background and ethnicity. The one thing they have in common is that they are all living with, or directly affected by, an inherited sight loss condition.
Meet a Researcher: Dr Nikolas Pontikos
Dr Nikolas Pontikos is a Senior Research Fellow at UCL Institute of Ophthalmology, and has been working on inherited retinal conditions for several years.
Meet our volunteers: Steve and Khadeja
Steve has been volunteering for Retina UK since its formation in 1976 and has been a part of the Helpline team since the early 1980s.. He remembers very well a caller named Khadeja, who called the Helpline multiple times, following her diagnosis with RP in 1999.
Meet our volunteers: Dr Katerina Tavoulari
Katerina joined the Retina UK team at the start of 2023 after hearing about the charity through her involvement in a research project at the University of Bath, where she works as an academic.
Meet our volunteers: Daniel Summers
Dan found out he had retinitis pigmentosa in February 2022, but he feels it has been “on cards for years”. He said he had “an inkling something was up but never did anything about it: a typical guy I guess!”
Graeme Ives: 6 marathons in the Sahara Desert for Retina UK
Graeme's son is living with retinitis pigmentosa and he has decided to take on an extreme challenge - running 250km across the Sahara Desert, with 6 stages, varying in length from 21km to 82 km, over 7 days.
Rose Earnshaw: An inspirational 8-year-old’s epic challenge
In August 2025, 8-year-old Rose Earnshaw is taking on a challenge like no other – completing 5 laps of her local village park (1 mile) every day throughout the month of August, in support of Retina UK’s vital work.