Trustees and staff

BOARD OF TRUSTEES

Matt O'Neill – Chair of Trustees

Matt O'Neill photo

I have ‘late onset’ narcolepsy, as it started in my 40’s.

I was diagnosed in 2011 with narcolepsy and cataplexy & R.E.M. Behavioural Sleep Disorder.

I spent until January 2017 on a long-term disability scheme from my employer until taking ill-health retirement. My main charity interests are in addressing inequalities in all areas, access to medicines, practical interventions and support.

I have spoken at narcolepsy conferences across the UK and Europe.

I have provided evidence as a lay witness, on behalf of the charity, for a number of high profile civil court cases including judicial review claims in the High Court relating to NHS funding of narcolepsy medication. I also act, on behalf of Narcolepsy UK, as an advocate in benefits appeals in the First Tier Tribunal.

I am also a Trustee of Neurological Alliance England and am registered with the European Medicines Agency as a patient representative and have made extensive clinical & pharmaceutical contacts to further Narcolepsy UK’s engagement & influence in the very specialist world of narcolepsy.

I have represented those in the UK with narcolepsy due to the Pandemrix vaccine in discussions with the European Commission, working alongside representatives from other European countries.

In addition to my corporate fundraising activities , I have undertaken a number of personal fundraising challenges including walking The Ridgeway with my son in 2012, cycling Nightrider London 2014 and Night Ride Edinburgh 2017.

Favourite saying: “Cataplexy is the highest compliment I can give you”.

Ed Coates – Vice-Chair of Trustees

Ed Coates photo

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

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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

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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

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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

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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 – examines the funny, puzzling, troubling lives of those with pathological patterns of sleep (including narcolepsy, of course) and was published by Profile Books in March 2018.

Helen Strongman - Trustee

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I am a university-based epidemiologist and have previously worked for healthcare market research agencies and the civil service. I spend a lot of time trying to explain what epidemiology and narcolepsy are. Epidemiology is the study of diseases in populations; who gets them, what happens next and why this might be. Narcolepsy is difficult to describe in one sentence; it’s important that we improve understanding of how this complex condition affects our lives. My goal as a trustee of Narcolepsy UK is to make this happen.

 

STAFF

Nicola Rule - Operations Manager

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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.

Christine Allen – Fundraiser

Christine Allen photo

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.

Linda Reynolds - Helpline and Benefits Advisor

Linda Reynolds

Married with one adult daughter and with a close relative who has narcolepsy and cataplexy. A rather eclectic work history ranging from lecturing to making designer wear, managing manufacturing departments and shops and ending as a civil servant working on Tax Credits and latterly Universal Credit.

 

Volunteer Staff

Amanda Molloy - Shared Care Advisor

Amanda Molloy

I became involved with Narcolepsy UK when my daughter was diagnosed with Narcolepsy and Cataplexy aged 15, after 7 years of symptoms. As a GP based in Sussex for 23 yrs., I want to bring my knowledge of the NHS systems and processes into my volunteer role for Narcolepsy UK to help people with narcolepsy get the best care they can from the NHS. Shared care agreements between specialists and GPs are in place for conditions like ADHD which use similar medicines to Narcolepsy. As Narcolepsy is a rare, poorly understood condition, people with narcolepsy can be forgotten and excluded from Shared Care agreements and this must be challenged at all levels. I also teach and train GP Registrars (junior doctors becoming GPs) across Sussex and Kent and include Narcolepsy awareness raising in all my teaching sessions since soon after my daughter’s diagnosis. As a Volunteer I am not always available but drop me a note and I'll come back to you soonest (please note - I do not give personal medical advice) - sharedcareadvisor@narcolepsy.org.uk 

 

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