James Ferguson

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Name: James Ferguson


Describe your motivation for getting involved with the LHON Society.


My experience of being diagnosed with LHON was that I felt incredibly isolated. I felt I’d lost all hope for the potential of my life. The past eight years have taught me that it doesn’t need to be that way. I want the society to be a vehicle to help people take their life where they want it to go.


What are your hopes for the LHON Society?


I want us to grow to a level where we are recognised by everyone with LHON. I want us to form a strong UK community that can support it self internally as well as driving research into preventions and cures.


My particular interest is in helping people with LHON to adjust, adapt and essentially learn how to live the life that they imagine. Over the past 8 years I’ve met numerous people with LHON living vastly different lives, but they have all managed to move forward. I want to set up a structure that reduces the chance of anyone feeling their life is over once diagnosed.


What is your guilty pleasure?


Mars ice-cream

What three words best describe you?


Fun, adventurous, optimistic