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Jon Rey-Hastie was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was three years old and has gradually lost muscle function over time. He is now almost paralysed and relies on a ventilator to breathe. A patient advocate and activist, he made a documentary about a journey around the UK and Europe to meet other adults living with DMD.
Jon has a PhD in Government from the University of Sussex. He is co-founder and CEO of DMD Pathfinders, a user led organisation of adults living with Duchenne which provides advice, guidance and support for other teenagers and adults living with the condition. He sits on the NHS England Strategic Co-production Group for Personalised Care, and is the Chair of Trustees of Possibility People, a user led organisation of disabled people in Sussex.
