Our Trustees and Staff
BOARD OF TRUSTEES
Matt O'Neill – Chair of Trustees
I have ‘late onset’ narcolepsy, as it started in my 40s.
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 a former 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 and 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”.
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.
Helen Strongman - Trustee
I am an Assistant Professor in epidemiology at the London School of Hygiene & Tropical Medicine (LSHTM). I am currently funded by the National Institute of Health & Care Research (NIHR) to describe healthcare services used by people with narcolepsy and Obstructive Sleep Apnoea before and after diagnosis, the comorbidities they experience, and how pathways to diagnosis and care could be improved. My research is motivated by my experiences as a person with narcolepsy and my role at Narcolepsy UK.
Mike Guthrie - Trustee
I have had narcolepsy with cataplexy since I was about 15 (I think), and wasn’t diagnosed until I was in my second year of University. Beforehand, I had been told I was burning the candle at both ends, then that I had sleep apnoea and also that getting my tonsils out would help. Finally, I was referred to a doctor in England who diagnosed me within 20 minutes and I left the hospital with modafinil that day. I still consider myself to be in a relatively privileged position compared to others who suffer from worse symptoms than I do. I am therefore delighted to help out the charity and others dealing with narcolepsy.
In a work context, I am a lawyer in the Real Estate Department at Burness Paull LLP. In my current role as Head of Home Sales, I am responsible for overseeing all of the residential sales and any associated purchases for my lawfirm’s housebuilder clients in Scotland. I supervise teams across the firm’s three offices. I also tutor at the University of Edinburgh on the professional practice diploma once a week during term time. In my spare time, I regularly like to run and cycle when I can find the time.
David Brocksom - Trustee
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.
Linda Reynolds - Helpline and Benefits Advisor
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
As well as being a trustee, Amanda is our Shared Care Advisor. She says: 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