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!”

His grandparents pushed him towards seeking medical advice and, within the space of two or three weeks he had a diagnosis*. “That was obviously a lot to take on”, he said, and he found himself wanting to “DO something”. He mentioned this to one of his clinicians, and they recommended he contact Retina UK about volunteering.

Getting straight into the thick of it, Dan went to our annual volunteer training weekend and met people with the same genetic diagnosis as him, which he found really useful. He’s now one of
our Technical Support Volunteers which means he’s able to use the skills he has from working in IT, for his volunteering.

Dan says his vision is still “pretty good”, and he’s appreciating being able to use that vision to help others with inherited sight loss conditions with things they now find difficult. In typically laid-back style, he says it’s been “nice to DO something, rather than sitting and dwelling on it”.


*Dan was treated privately, rather than on the NHS.

Genetic counselling and genetic testing

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