Our community support us in many different ways, from completing surveys, volunteering, raising awareness and fundraising.
This is a small selection of supporter stories. If you have a story to tell, we would love to hear from you. Please email info@RetinaUK.org.uk and we'll get in touch to capture your tale.
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.
James, who lives with retinitis pigmentosa, is running the TCS London Marathon in April 2025 to raise vital funds for Retina UK.
Bhavini was diagnosed with RP in 1997 aged 17. The consultant who confirmed her diagnosis told her that “there was no cure or treatment and she should prepare to go blind".
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.
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.
Rachael first noticed she had sight problems at the age of 15. She went to her local eye clinic, who said she had an astigmatism.
Russ was diagnosed with Choroideremia at the age of 11, after visiting caves in Spain and not being able to see anything.
Simon talks about his experience of genetic testing and counselling.
Emily Kearney is mum to four boys, aged four to 13, two of whom are living with an inherited sight loss condition.
“Being part of something and feeling that you are not alone,” are just two of the positive benefits Cindy Peacock says she experiences as a volunteer with Retina UK.
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!”
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.
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.
Martin started volunteering for Retina UK in 2014 after retiring as a Chartered Civil Engineer.
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.
