Meet our community: James Moore
When James Moore moved to Liverpool from Ireland one of the first things he did was search online for information and support for those living with retinitis pigmentosa (RP). Little did James know that search two years ago would lead him to new friendships and taking part in a clinical trial for his sight loss condition.
James, 25, a civil servant, was diagnosed with X-linked RP at the age of six in a hospital in Paris where his family was living at the time.
“Initially, it was a strange experience because at that stage I was super young and didn’t speak fluent French. While they were trying to figure out what was going on, I didn’t fully understand, but once they confirmed I had RP and sat me down to discuss it, I realised the severity of the situation,” he explained.
“I think I was extremely fortunate to be diagnosed by those doctors because they held a level of optimism that was unprecedented in 2006. One of the doctors said that if they didn’t have some type of cure in the next 15 years, he would quit his job. That was amazing because it was the first and last bit of optimism I would receive for the next 15 years, but I always held on to that statement.”
When James moved to Liverpool in 2024, he searched online for charities providing support, found Retina UK and phoned our helpline.
He said: “Mark on the helpline was the first person outside of my immediate family I had ever spoken to that had RP too. He gave me such an incredible amount of information and support within my first few days of living here. I just remember feeling so reassured and supported right off the bat. It was also incredibly refreshing to speak to someone who just fully understood what it was like to have RP – I never ever had to explain myself, he just got it.”
James went on to join our young adults group and lived experience panel.
“The young adults group is such an incredible support system… it’s like a family of people with RP that constantly provide each other with tips, support and information. It’s been life-changing for me.”
It was an opportunity promoted to our lived experience panel that resulted in a dream coming true for James.
He explained: “I’ve had the incredible privilege of taking part in a clinical trial for XLRP that uses gene therapy to restore and maintain vision.
“This is something I followed for years and always dreamed of. It was a Retina UK email that was sent to me as a member of the lived experience panel that signposted me to this trial, so in that way, Retina UK literally led me straight to a clinic that performed gene therapy on one of my eyes. I cannot understate the value of this, as you can imagine.”
As far as the trial is concerned James feels extremely fortunate to have been given this opportunity.
“Taking part in a clinical trial is extremely full on, and there’s an abundance of testing and experimentation involved, but none of it ever bothered me because I was just grateful to be there the whole time,” he said.
“It’s a genuine honour to be one of the first people in the world to undergo that procedure.”
Lived experience panel
Sign up to the Retina UK lived experience panel and we will notify you of relevant opportunities to get involved in focus groups, surveys, research projects and clinical trials.
All we need is a little more information such as your sight loss condition, visual impairment category and age. We will always contact you to ask if you’d like to be involved in a specific project and we will never pass your details to a third party without your consent.
Sign up online at RetinaUK.org.uk/lived-experience or call us on 01280 821334.