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.
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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.
Dr Nikolas Pontikos is a Senior Research Fellow at UCL Institute of Ophthalmology, and has been working on inherited retinal conditions for several years.
Amar Latif is an adventurer, entrepreneur, TV presenter and public speaker. He became an Ambassador for Retina UK in 2020.
Steve is a Paralympian who was diagnosed with retinitis pigmentosa (RP) in 2011.
Her work with us enables her to achieve her aim of empowering others living with similar conditions to her own.
Simon talks about his experience of genetic testing and counselling.
As Luxturna reaches the clinic and other gene-specific therapies for inherited retinal disease get closer to the end of the development pipeline, it is becoming ever more important that affected families can access a genetic diagnosis, potentially opening up choices around treatment and clinical trial participation.
Your generous support allows Retina UK to fund the work of leading scientists who are increasing understanding of inherited sight loss and moving us closer to treatments.
With a significant proportion of inherited retinal conditions being caused by unidentified genetic faults, and many families unable to get clear results from genetic tests in clinic, the project set out to solve previously undiagnosable cases and discover more of the genes and mutations that are associated with sight loss.
Genetic testing, usually via a blood sample, is used to try and identify which gene contains the fault that is causing an individual’s sight loss.