Trustees and staff

BOARD OF TRUSTEES

Matt O'Neill – Chair of Trustees

A “late-developing” narcoleptic, with both narcolepsy & cataplexy, Matt is currently on a long-term disability scheme from his employer as he attempts to bring his condition under control.  Previously, he has headed strategic change programmes within the City of London and managed large teams across diverse support roles covering incident management, business continuity, property and technology relocation and infrastructure projects.  His previous experience in building capability and leading and energising teams is an ideal fit for a small charity with a huge amount to deliver.

Ed Coates – Vice-Chair of Trustees

Ed became involved with Narcolepsy UK soon after his daughter was diagnosed with narcolepsy at the age of 11, and he has been a Trustee and Director for many years. As a registered social work professional, he brings his knowledge of work with children and families to inform his interest in all aspects of the needs of children with narcolepsy. He is particularly interested in the emotional impact of narcolepsy on those affected.

Ed has significant experience of working with professionals across agencies. He regularly presents to conferences and will also provide lectures to health, education or other professional groups on request.

Tim Kavanagh – Trustee

Tim is a person with narcolepsy, which was diagnosed in his early twenties. In the past he has been both a Digital Campaign Manager in the recruitment advertising industry, and also Production Coordinator for a leading UK website. Unfortunately his narcolepsy symptoms reached a severity that meant that he was no longer able to work, but now he brings to bear his previous professional experience together with his patient perspective equally in pursuing the charity's aims. He was born and raised in North London, but these days can be found in more peaceful yet remote spaces in South Wales.

Steve Jones – Trustee

Originally from South Wales, Steve has lived and worked for the majority of his career in the East Midlands. He is a patent attorney based in Nottingham. Steve became involved with Narcolepsy UK after his daughter was diagnosed with the condition, at the age of 9.  As a result, Steve and his family have experience of the issues faced by young people with narcolepsy, including at school and now university.

Hugh Davies-Webb – Trustee

Hugh was born and brought up in the West Country, and trained at the Royal Welsh College of Music and Drama in Stage Management. Hugh was diagnosed with Narcolepsy when he was 28 years old, although he had first experienced the symptoms of narcolepsy aged around 19. Hugh is self-employed, working as as a live video director and computer video and show control programmer for live events and television.

Henry Nicholls - Trustee

Henry is a science journalist and narcoleptic. He studied zoology at Cambridge University, spent a year in the Kalahari Desert working with meerkats before completing a PhD on evolutionary ecology at Sheffield University. It was during this time that he first began to notice symptoms of narcolepsy and cataplexy.

Henry writes on all aspects of biological sciences, has a zoology blog hosted by The Guardian and makes regular contributions to the award-winning BBC Earth website. He is an ambassador for the Galapagos Conservation Trust and the editor of their members’ magazine. His first popular science book – Lonesome George – was a contender for the Guardian First Book Award and was shortlisted for the Royal Society’s General Book Prize. He has written two further books – The Way of the Panda and The Galapagos. His latest literary adventure – Sleepyhead – will examine the funny, puzzling, troubling lives of those with pathological patterns of sleep (including narcolepsy, of course) and will be published by Profile Books in 2018.

STAFF

Nicola Rule - Operations Manager

Nicola became involved with Narcolepsy UK following her daughter's diagnosis. Initially a Trustee, she resigned from that position in order to take on her current role as Operations Manager and general factotum - the 'go to' person for almost anything! Nicola's background is in property - running management companies/property businesses, along with local charitable activity. Born and bred in Huntingdonshire, Nicola is married with two daughters, a menagerie of animals, and a dedication to raising awareness of narcolepsy.

Liam Sloan – Volunteer Coordinator

Liam was diagnosed with narcolepsy at the age of 27, though he can remember his symptoms starting from about 12 years old. After receiving help from the charity himself, he now enjoys helping others with narcolepsy and their families. Liam lives in Scotland.

Rebecca Malone – Benefits and Helpline Adviser

Born and raised on the East Coast of Bonny Scotland, Rebecca has three children, including a daughter with narcolepsy. Her background is in adult nursing, which she has been doing for the past ten years. Rebecca has worked part-time for Narcolepsy UK since January 2014.

Christine Allen – Fundraiser

Christine has been a consultant fundraiser for many types of organisations and projects. She has a background in managing children’s social care teams for local authorities. She also runs her own charitable organisation for children with emotional and behavioural disorders, so she knows first-hand the challenges and financial struggles faced by voluntary sector organisations. She lives in London with her two children.

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