Co-founder and CEO of Duchenne UK

Emily graduated from Oxford University with a degree in modern history, and had a successful career as a reporter and anchor for Channel 4 News and CNN International.

After her eldest son was diagnosed with Duchenne muscular dystrophy (DMD) she established the Duchenne Children’s Trust. The charity joined forces with Joining Jack and is now Duchenne UK (DUK). Since 2012 they have spent more than £17 million on accelerating the search for treatments and a cure for DMD, and have set up groundbreaking and award-winning collaborations, turning DUK into the UK’s largest funder of DMD research.

Emily has advocated on behalf of patients around the world in meetings at the FDA, EMA, MHRA, NICE and SMC. She was praised in the House of Commons for the charity’s work by the then Minister for Life Sciences, and in 2017 Emily and her co-founder Alex Johnson were awarded a Points of Light award by the Prime Minister for their passionate work.

She is a member of the MHRA’s Patient Group Consultative Forum, as well as the Patient Reference Group for their new Innovative Licensing and Access Pathway (ILAP). Emily also sits on the Steering Group for the Patient Organisation Forum at the Association of British Pharmaceutical Industries (ABPI).