We held our 2nd webinar on Monday, 3rd June 2024 and had two really interesting speakers learning about the latest research into RP from Dr. Roly Megaw, University of Edinburgh and about the patient's perspective into sight loss research for Usher patients from Steve White, Cure Usher

The webinar demonstrated that there is much to be hopeful for in respect of sight loss research.

Click here to see the video

Our trustee, Fiona Copeland, recently met Adrian at a fundraising event for Retina UK.  He shared with her his Retinitis Pigmentosa (RP) diagnosis and how it affects him every day. He is keen to share his story to help raise awareness of RP and to help demonstrate why it is so important that we continue to advocate for research into this condition.  If you would like to share your story then please contact us.

The Long Road After Diagnosis

By Adrian Madzura

After being diagnosed with retinitis pigmentosa, a degenerative eye condition, one man’s life was turned upside down. Independence and certainty disappeared almost overnight. What followed was a difficult journey through fear and financial hardship but also the discovery of art, support and a new sense of purpose.

“It takes time to accept the situation you’re in… And to learn to love yourself all over again.”

Before his diagnosis, Adrian Paternoster’s life followed a familiar rhythm. He worked full-time, travelled to work each day and built a steady life with his wife, Louise. The couple had moved from High Wycombe to Aylesbury, settling into what felt like a normal routine. Work was physical and demanding, but it was also stable.

Then small things began to go wrong.